The perspectives of people living with dementia and their carers on the role of the general practice nurse in dementia care provision: a qualitative study

Purposive sampling was used. The inclusion criteria were people living with dementia who have seen a GPN for any reason within the last 12 months and/or their carer(s). In this study, ‘living with dementia’ meant the participant verbally reported to the primary researcher (CG) at the time of recruitment that they had been told they had dementia by a health practitioner. Carers in this study referred to family members or friends that provided informal unpaid care. Participants were recruited and data were analysed concurrently. Sampling ceased when data sufficiency (richness of data) was reached. Data sufficiency is said to be reached when the data is comprehensive enough (depth) to both identify thematic patterns and to account for contrary examples (breadth) (Braun and Clarke 2021).

Study participants were recruited through local dementia support groups in the regional towns of Geelong and Ballarat in Victoria, Australia. At one meeting in each of Geelong and Ballarat, the primary researcher provided an overview of the project. The Participant Information and Consent Form (PICF) was discussed, and a hard copy provided. In addition to the full PICF, the PICF was available in a simplified format for people living with dementia to aid comprehension of the information. Potential participants took the PICF home with them to further consider the information. If the person decided to proceed, they contacted the primary researcher by phone or email to arrange an interview time. Each study participant was offered a AU$50 Coles–Myer gift card in appreciation of their time and contribution to the study.

In this study, consistent with an inclusive approach to research participation and consent, all potential participants living with dementia and or memory or thinking concerns were offered the opportunity to provide informed and signed consent. This required the potential participant to demonstrate an understanding of the research study as described in the PICF and the implications of signing the consent form. If a potential participant living with dementia was unable to meet this cognitive-competency-based approach to informed consent, then ‘process consent’ (Dewing 2007) was used. ‘Process consent’ is a valid and acceptable way to include people living with dementia in research from which they might otherwise have been excluded (Dewing 2007). Capacity to consent is demonstrated by the ability of the person living with dementia to briefly describe the study purpose and how they can contribute. Not only is capacity to consent documented at the outset of the study, but it is also re-affirmed actively at the time of the interview by the observed degree of engagement of the person living with dementia.

The interviews were conducted by the primary researcher (CG), a PhD candidate and registered nurse in primary care. The primary researcher had previously met a few participants at support groups, but there was no relationship that would impact the data collection process or findings. The participants were informed the study was part of the primary researcher’s PhD research. The person living with dementia and/or their carer(s) were interviewed in the person’s home, as a dyad or individual, depending on their preference. No other person was present at the interview.

The demographics survey and interview guide were sent to each study participant at the time of scheduling the interview. The completed demographics survey and signed consent form were returned to the primary researcher at the time of the interview taking place. The interviews ranged between 34 and 49 min, with an average length of 40 min (total time = 277 min). The interview discussion was audio-recorded with consent and transcribed verbatim by a professional medical transcription service. The transcripts were not checked by participants as clarification of meaning was sought at the time of discussion.

The interview guide (Fig. 1) was provided to participants prior to the interview so they had time to consider the guiding questions and five recommendations. The authors designed the questions to probe participant perspectives on topics related to the research question.

Fig. 1.

Interview schedule.

The recommendations were précised as the original recommendations were lengthy and contained multiple concepts. Care was taken not to lose the intent of the recommendation when summarising. At the time of the interview, the primary researcher read out each précised recommendation and presented each on an individual A5 card. The cards could be handled, sorted and referred to by the participants as desired during the interview.

All study participants believed the GPN had a potential role in providing care that met the health and social care needs of people living with dementia and or their carer(s).

Personally, I think that the nurses have got a golden opportunity to bridge that moment from the moment of diagnosis, to empowering people to take charge of their lives. (Carer 2)

The majority of study participants described nurses as possessing inherent qualities that support the provision of person-centred best-practice care for people living with dementia and or their carer(s). Words including ‘respectful’, ‘empathetic’, ‘approachable’ and ‘good listeners’ were often used to describe nurses’ qualities.

That’s the whole nursing thing, isn’t it? I know I could ask her any questions, that sort of relationship. She just was approachable. (Dyad 4, Person living with dementia)

GPNs have a generalist scope of practice and work with a wide range of patients and clinical conditions. According to a carer, specialisation in dementia care was not required to be able to provide best-practice dementia care.

There is nothing to stop [the nurse] having literature there with perhaps discussion questions as prompts for them, and to be able to say, look, we can run through this today … let’s look at what we can do from here on in to deal with it. That should be possible for a generalist. (Carer 2)

However, all study participants stated that the GPN required training in dementia knowledge and appropriate communication skills. In particular, the participants living with dementia stated that the GPN needed the skills to ask questions to facilitate a conversation about cognition because, currently, ‘the opening is not there to do that’ (Person living with dementia 1). The nurses also needed to know what ‘to do with [the answer] as they don’t know what to do if there is [a cognitive concern]’ (Person living with dementia 1).

All study participants discussed how better communication and collaboration between the general practitioner and GPN would improve the quality of dementia care provided. They wanted the general practitioner and GPN to work as a team. If a person disclosed a concern about their own or a family member’s change in cognition to the GPN, it was considered essential that the concern was reported to the general practitioner to trigger appropriate dementia management.

I said, well, my memory’s not as good as it used to be. That’s when she wrote it all down and handed it to [my doctor], and that’s where it all started … because I’d never said anything to [my doctor] about that … I found that really helpful. (Dyad 3, Person living with dementia)

The majority of study participants proposed models of care that would position the nurse as a key contact and ongoing support person for people living with dementia and/or their carer(s).

I think that it would be fantastic if there was, at each practice, a nurse who could then take them from the doctor who’s just made the diagnosis. If we could ever get doctors to say, I understand that this is pretty confronting, instead of saying, look, go away, you’re going to be fine … to be able to then say, look, we’ve got nurse so-and-so here … she’s going to be able to talk through with you some practicalities but also some things that you may not have thought about … Let’s find out what’s happening. What’s available? What can we do to make your life a little easier? (Carer 2)

Respectful communication includes the language used by the nurse and their interaction with a person. The consistent use of appropriate, accurate, empowering and non-stigmatising language was perceived as important. Communicating respectfully also required the GPN to include the person living with dementia in the conversation, even if the person could not retain the conversation.

One of things that I found constantly, [the nurse] would often not acknowledge him … would talk around him … terribly disrespectful. [Even if he] does not remember anything two minutes after he’s heard it anyway … it should be explained to him. (Dyad 2, Carer)

Using a conversational style to explore cognitive concerns was seen as more helpful and supportive than following a predetermined format such as a template or checklist.

[The nurse] talked to us and I realised afterwards [she] was weaving the question into the conversation. So, [she] got the answer, but it wasn’t, da, da, da, da, you know what I mean? Then I thought afterwards, that was just a very relaxed conversation … But that was the comfort level [the nurse] provided. (Dyad 1, Carer)

In addition to asking questions, the nurse needed good listening skills. All study participants described listening as not just asking questions and getting an answer but actually hearing what the person is trying to say or ‘being heard’.

Listen beyond what they’re telling you. You need to be a good listener … rather than just putting the question, and getting the answer, and writing it down … they don’t hear you, that’s the thing. Because I guess they’re not trained to hear you. I was there for half an hour, three-quarters of an hour, but it was just straightforward questions, no listening. No listening beyond that first question … he’d set himself up and be really, really good, and I’d say, but, and they’d say, no, we’re listening, and you felt like shaking the person and saying, but you are not hearing properly. (Carer 1)

All study participants wanted information on dementia and perceived that ‘generally, nurses give you much better information than the doctors’ (Dyad 2, Carer).

It’s the not knowing and it’s the – I’m exhausted, yeah. Basically, I live on my nerves, and I’m a pretty strong person. But it’s just the not knowing from one minute to the next what’s going to happen, and nobody there to tell you what’s going to happen. (Dyad 4, Carer)

The study participants wanted information to be provided in a way that could be easily understood and ‘not in medical lingo’ (Dyad 4, Carer). They wanted ‘clear advice [that was] unambiguous … and not misinformation’ (Carer 1). And they wanted this information:

Right at the start … so this is dementia … let’s walk it through step by step [and] not just saying it once, and expecting it to be retained, because it won’t be. Even with the carers, their focus is on the person they’re caring for, not on listening to what you’re being told. (Carer 2)

Participants especially appreciated the nurses who spent time with them and listened to their concerns.

She was very, very good with me, very slow, and gave me opportunities to talk about my memory. (Person living with dementia 1)

All study participants highlighted that people want to know different things at different times and that the GPNs needed to be responsive to that. They wanted nurses to ask ‘how are you travelling? How’s it going? Can I do anything more at this stage?’ (Carer 2). Participants reported that the nurse needed to be proactive and do more than just asking:

What can we do for you isn’t enough as I haven’t got a clue. I don’t know. I don’t know what’s available … so saying what could we do for you, is not [helpful ]… [the nurse needs to say] well, these things are available, do you think any of that would help you? This would do that for you, and like that’s what that’s all about. (Person living with dementia 1)

Providing people living with dementia and/or carer(s) with the information that they wanted was emphasised.

Tell me what I want to know. I’m not putting things under the mat and pretending it’s not happening. I want to know, and I think that’s a difference as well. If you really want to know. Like, if you’ve got cancer, some people don’t want to know, and that’s fine, that’s their privilege, but I want to know, and I want to know the steps of it … If she had explained some of that to me, I would’ve understood it at that stage. (Person living with dementia 1)

All study participants highlighted the need for support and stated that just giving information was not enough.

You can read [a brochure], and it tells you what it’s about, but it’s not the same as support, is it? (Dyad 3, Person living with dementia)

The carer(s) participating in the study valued support groups as these groups provided an opportunity:

To be together with other people who are going through the same sort of thing to find out what has helped with them and that usually [you] get information from social groups before you do from a health professional. (Dyad 2, Carer)

However, study participants stated that the GPNs ‘need to know [available services] because you haven’t got a clue what’s available’ (Dyad 3, Carer).

Most study participants wanted the nurse to actively help people access services.

When people are given a bit of paper, and they’re asked to ring up Dementia Australia, whatever, they can’t do that. They’ve become paralysed by the circumstance, and they need to be able to have someone generally guide them through that way … Whilst people are in the room, it would be great, for instance, for a nurse to pick up the phone, and touch base with Dementia Australia or anyone, and just say, look, I’ve got this beautiful couple here. Can we make an appointment for them to pop in on you? (Carer 2)

Support should be offered at the time of diagnosis and be ongoing.

There should be no gap. The doctor should literally say, now [the nurse] is going to look after you throughout this whole journey. Then immediately, you would feel the shoulders drop with relief … there is just the removal of that feeling of isolation, and why me. (Carer 2)

The carer needs to be included in care planning and decision-making because ‘for the partners to come to grips with it, both of us have to be involved and understand it’ (Dyad 3, Person living with dementia). All people living with dementia and carer(s) in the study stressed that they were a team and that the care approach should be ‘let us look at what you as a team need to do, what are the support mechanisms you both need in place’ (Carer 2).

The carers also reported they had a significant role as an advocate. They stated that the person living with dementia received better care if they were present.

First and foremost, as a carer, I think it’s important to be there because if you’re not they don’t get treated the same way. … we can all communicate and all be on the same page about the future and what that person’s needs will be in the future, it’s really important. (Carer 1)