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Australian Journal of Primary Health Australian Journal of Primary Health Society
The issues influencing community health services and primary health care
RESEARCH ARTICLE (Open Access)

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

Caroline Gibson A B * , Dianne Goeman A C , Constance Dimity Pond D , Mark Yates B E and Alison M. Hutchinson F G
+ Author Affiliations
- Author Affiliations

A University of Newcastle, School of Medicine and Public Health, Callaghan, NSW 2308, Australia.

B Grampians Health, Ballarat, Vic 3350, Australia.

C Faculty of Medicine, Nursing and Health Sciences, Monash University, Frankston, Vic 3800, Australia.

D University of Tasmania, Wicking Dementia and Teaching Centre, Hobart, Tas 7000, Australia.

E Deakin University, School of Medicine, Geelong, Vic 3220, Australia.

F Deakin University, School of Nursing and Midwifery and Centre for Quality and Patient Safety Research in the Institute for Health Transformation, Geelong, Vic 3220, Australia.

G Barwon Health, Geelong, Vic 3220, Australia.

* Correspondence to: caroline.gibson@uon.edu.au

Australian Journal of Primary Health 30, PY24071 https://doi.org/10.1071/PY24071
Submitted: 25 May 2024  Accepted: 30 October 2024  Published: 14 November 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

Models that optimise the role of the general practice nurse have the potential to deliver cost-effective best-practice dementia care in the primary care setting. Patient experience is recognised as a vital contribution to the design, provision and evaluation of healthcare services. The aim of this study was to gain insights into the healthcare needs and experiences of people living with dementia and carers as relevant to the provision of dementia care by general practice nurses.

Methods

A qualitative design with semi-structured interviews was employed. Data were transcribed verbatim and thematically analysed. Six carers and five people living with dementia who received care from a general practice nurse in the previous 12 months took part in the study.

Results

Five overarching themes were identified: (1) the general practice nurse and dementia care: a golden opportunity, (2) respectful communication: talk to me and hear what I am saying, (3) person-centred information: tell me what I want to know, (4) provide support: more than just information provision, and (5) include the carer: we are a team.

Conclusion

This study describes the experiences and healthcare needs of people living with dementia and their carer(s) with regard to the general practice nurse role. These findings can inform strategies to support the general practice nurse provision of dementia care that meet the healthcare needs of people living with dementia and carers.

Keywords: carers, nurses, people living with dementia, primary care, unmet needs.

Introduction

With an ageing population and a growing prevalence of people living with dementia and their carer(s), the demand for best-practice dementia care in primary care settings is increasing (Prince et al. 2016). Nurses working in general practice or medical clinics, hereafter referred to as general practice nurses (GPNs), are significant contributors to the delivery of primary care nationally and internationally (Norful et al. 2017). GPNs are in an opportune position to provide early dementia information and support during the diagnosis and care process (Phillips et al. 2011). The GPN role in dementia care has been explored from the perspective of the GPN (Gibson et al. 2020; Gibson et al. 2024). In a recent Delphi study five recommendations from the Australian Clinical Practice Guidelines and Principles of Care for People with Dementia (Guidelines Adaptation Committee 2016) were endorsed as highly relevant to the role of the GPN (Gibson et al. 2023). Australian GPNs agreed that the five recommendations, which all contain elements of person-centred care (the delivery of individualised information, ongoing support and inclusion of the carer in decision making) were highly relevant to their practice (Gibson et al. 2024). However, GPNs reported that they would need support to operationalise them (Gibson et al. 2024).

If models of care are developed to support GPNs taking a proactive approach to the care of people living with dementia and carer(s), then understanding their healthcare needs and experiences in the provision of dementia care is essential. Research has shown carers report high levels of unmet needs associated with caring for someone living with dementia in the community (Zwingmann et al. 2019; Mansfield et al. 2023). However, there is limited literature on the carer interaction with the GPN and views on the potential role of the GPN in dementia care provision. Compared with research with carer(s) of people living with dementia and people with other chronic diseases, relatively little is known about the unmet primary care experiences of community-dwelling people living with dementia (Mansfield et al. 2022).

To the best of our knowledge, there are no studies on the experiences and expectations of people living with dementia and carers in relation to the GPN. Therefore, the purpose of this study was to understand the experiences of people living with dementia and their carer(s) in regard to the GPN role in dementia care provision. The study findings will inform the development of a model of care to support the GPN in the delivery of person-centred care that meets the perceived health and social care needs of people living with dementia and carer(s) in primary care.

Methods

Research aims

To understand the healthcare needs and experiences of people living with dementia and carer(s) relevant to the provision of dementia care by the GPN, the aims of this study were to:

  1. Gain insights into the perspectives of people living with dementia and or their carer(s) about the role of the GPN in dementia care provision.

  2. Identify which of the Australian Clinical Practice Guidelines and Principles of Care for People with Dementia recommendations endorsed as highly relevant to the role of the GPN are most important to them.

Study design

The research questions for this study were addressed within the social constructionism theory, which is concerned with the processes by which people describe, explain or account for the world in which they live (Crotty 2003). A qualitative design with semi-structured interviews was used to explore the views of people living with dementia and or their carer(s) to address the research questions. This approach was taken as semi-structured interviews have the potential to provide a deeper understanding of participant experience than would be obtained from quantitative methods. This approach also allowed the study participants to raise topics important to them that may not have previously been thought of as pertinent by the research team. The consolidated criteria for reporting qualitative research (COREQ) checklist (Tong et al. 2007) was used for reporting the research.

Participants

Study sample

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).

Recruitment

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.

Consent

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.

Data collection

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.

Interview guide

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.


PY24071_F1.gif

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.

Data analysis

The data were coded and analysed using Braun and Clarke’s six steps of thematic analysis: familiarisation, generating codes, constructing themes, revising and defining themes, and reporting (Braun and Clarke 2006). Three study authors (CG, DG and DP) met to develop the analytic coding framework according to deductive codes identified from study aims and the five recommendations described as relevant to the GPN provision of dementia care. The transcribed interviews and codes were entered into the NVivo11 qualitative software (ver. 14, Lumivero). CG then deductively coded all data by systematically going through each transcript, highlighting meaningful salient text and attaching an appropriate code from the analytic coding framework. When new concepts emerged, CG, DG and DP met to discuss and inductively develop additional codes. Any discrepancies were resolved via consensus. If consensus could not be reached, two study authors (MY and AH) reviewed the data. The transcripts were re-examined to apply any new codes. Three authors (CG, DG and DP) independently investigated the codes for similarities, connections and patterns in the data and identified themes relevant to the research questions.

An example of the coding framework is described in Table 1.

Table 1.Example of the coding framework used to arrive at themes.

ThemeExample codesExample text
The general practice nurse and dementia care: a golden opportunityQualities of being a nurse Experience Give more information/time than general practitioner Team-based care Need to know what to doShe was fabulous, so if you’ve got a nurse who has had a few years in the profession, they’re worth their weight in gold… [he] went to sleep while she was talking to him, but that was cool, she wasn’t fazed, so she was just fabulous. (Dyad 4, Carer)
Respectful communication: talk to me and hear what I am sayingBeing heard Understanding what is really going on Giving me timeHe had been my dad’s doctor for a long time and he also heard me, which I really appreciated because often people’s reaction is, oh yeah, we all get old, we all forget. It’s just getting old but no, he heard me. (Carer 1)
Person-centred information: tell me what I want to knowInformation relevant to me Information I can understand Step-by-stepInformation is important. So me and the man, we manage a lot of things ourselves, but some information like, okay, this is how you deal with a situation when Graeme’s like such and such. (Dyad 1, Carer)
Provide support: more than just information provisionNeed actual assistance assessing supports A brochure is not enough Support needs change over time Ask more than onceYes, just to ease them into them accessing the other networks that they need, to say, how are you travelling? How’s it going? Can I do anything more at this stage? The commonest word that carers use to me is lonely, and so just having that person, because people don’t know how to react. (Carer 2)
Include the carer: we are a teamAdvocate Informant Carers have own health and social care needs Carers need informationWe know each other. Sometimes that can be hard, so if the nurses can involve the partners … we haven’t seen much written stuff for the partners to come to grips with it. (Dyad 3, Person living with dementia)

Ethics approval

This project was approved by the University of Newcastle’s Human Research Ethics Committee, Approval No. H-2022-0376.

Results

Eleven people participated in the study (Table 2). Five (45%) participants identified as living with dementia and six (55%) were carers. The majority (64%) of participants were female. All participants, excepting one carer, were 70 years in age and over. The majority (82%) of participants participated in the interviews as a dyad.

Table 2.Participant characteristics.

 Carer (N = 11, n = 6)Person living with dementia (N = 11, n = 5)
Age (years)
 50–5910
 60–6900
 70–7944
 80+11
Gender
 Male13
 Female52
Living arrangement
 Alone11
 As dyad54
Living location
 Geelong32
 Ballarat33
Length of time dementia noted by carer
 Less than 2 years2
 2–4 years1
 Greater than 5 years2
Interaction with GPN
 Care plan and or health assessment44
 Brief encounters, e.g. immunisations or wound care only21

Themes

In the interviews, the study participants did not discuss each recommendation specifically. They considered the recommendations in the context of the GPN role in provision of dementia care overall. Five overarching themes (Fig. 2) were identified, describing the healthcare needs and experiences of people living with dementia and/or their carer(s). The themes reflect study participants’ views on the role of the GPN and what is important to them related to the five recommendations for best-practice dementia care by the GPN.

Fig. 2.

Themes.


PY24071_F2.gif
Theme 1 – the general practice nurse and dementia care: a golden opportunity

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)

Theme 2 – respectful communication: talk to me and hear what I am saying

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)

Theme 3 – person-centred information: tell me what I want to know

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)

Theme 4 – provide support: more than just information provision

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)

Theme 5 – include the carer: we are a team

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)

Discussion

In this study, people living with dementia and their carer(s) felt strongly that the GPN had a role in the provision of dementia care but that the nurse was not currently meeting perceived important wants and needs. Our findings show that people living with dementia and their carer(s) perceived GPNs to have the inherent qualities required for the provision of person-centred dementia care. Delivering care within a person-centred framework underpins best-practice dementia care (Manthorpe and Samsi 2016). As has been identified in effective nurse-led chronic disease management literature (Stephen et al. 2018), study participants valued their relationships with the GPN and appreciated nurses who spent time with them and listened to their concerns (Khanassov et al. 2021).

However, both people living with dementia and carer(s) participating in this study stated that further dementia knowledge and skills training is needed for nurses to provide optimal care. Authors of a recent systematic review reported that nurses, in general, lack knowledge, communication skills, management strategies and confidence in the provision of dementia care (Evripidou et al. 2019) and GPNs have indicated the same (Gibson et al. 2024). Researchers have implemented dedicated dementia expertise, including the addition of specialist nursing staff, with the aim of improving the primary care role in dementia care with mixed results (Frost et al. 2020). GPNs are an existing primary care workforce and, given that co-morbidity in people living with dementia is high (Bunn et al. 2014), the GPN is likely to have established a therapeutic relationship with people with cognitive decline through routine primary care treatment, health assessments and chronic disease management. Regardless of their role and expertise, GPNs need to possess the knowledge and skills to provide high-quality care to all patients they encounter in general practice (Halcomb et al. 2019), including those impacted by dementia. The study participants agreed that generalist nurses should have the knowledge and skills to recognise and provide information and support to the person living with dementia and their carer(s).

In relation to the five best-practice dementia care recommendations that have previously been described as relevant to the GPN role (Gibson et al. 2023), study participants agreed all were important to the delivery of care that they wanted and needed. They particularly highlighted the need for good communication skills and active linking with support services.

As described in the literature, people living with dementia and carer(s) appreciate primary care nurses who spend time with them and listen to their concerns (Khanassov et al. 2021). However, in this study, the participants stressed ‘more than just listening’ was needed. For a GPN to be responsive to their individual needs, participants described wanting to ‘be heard’, not just listened to, and having their concerns acknowledged and understood beyond a superficial conversation. As described by the study participants, ‘being heard’ relates to active listening, where the nurse picks up on more than what is being said, noticing cues and exploring cognitive changes. Active listening leads to a better understanding of the patient’s, and carers, experience and delivering person-centred care (Haley et al. 2017).

As part of good communication skills, study participants maintained that the nurse needed to be proactive about asking about cognition. Most study participants described the nurse as not initiating a conversation about cognition. It is known that people are reluctant to disclose cognitive concerns either in regard to themselves or family members (Aminzadeh et al. 2012). This is consistent with the literature indicating that GPNs find asking about cognitive decline difficult (Gibson et al. 2024), and if they were to ask, they would not know what to do next, due to a lack of knowledge and experience (Evripidou et al. 2019).

Study participants wanted more than just the provision of information on dementia and support services. Carers usually find out about services through informal networks and not their primary care practitioner (Khanassov et al. 2021; Mansfield et al. 2023), but in this study, all carer(s) wanted the GPN to actively support them in locating and accessing relevant support services. This requires the GPNs to know the local support services available, which GPNs have recognised is needed and an area GPNs need to improve on (Gibson et al. 2024).

Authors argue that systemic change is needed within primary care and that high performing primary care encompasses a team-based approach to deliver high quality dementia care (Spenceley et al. 2015). Study participants wanted a dyadic approach to care, which is supported in the literature as best-practice dementia care (Prince et al. 2016). The people living with dementia and carers participating in this study stated that they wanted the GPN and general practitioner to work more collaboratively. It was strongly agreed that the nurse takes a front-line role in dementia care provision in primary care, provides ongoing care from the time of diagnosis, and is the primary contact if a person living with dementia and/or carers needs support.

Strengths and limitations

A strength of this study was the use of semi-structured interviews to facilitate people living with dementia and carers in contributing, exploring and clarifying their views on a research topic about which little is known. Another strength was the structured analysis process. The high level of agreement between the themes generated independently by the authors increased our confidence in the results.

The use of a purposive sample can limit trustworthiness. However, all study participants had received care from a nurse in a primary care setting. This meant they could actively reflect on and provide insightful responses to the research questions, enriching the findings about the experience of dementia care provision and the GPN role. There was almost equal representation from both people living with dementia and carers, allowing both perspectives to be reflected in the findings.

A limitation was the small sample size, as it is likely not representative of all people living with dementia and carers; however, all participants drew on their personal experiences, ensuring high internal validity, and there was considerable consistency in responses. Additionally, all participants lived in a regional town, limiting the transferability of the findings to other settings.

Conclusion

As the number of people living with dementia and their carer(s) increases, the GPN role in the delivery of best-practice dementia care in primary care needs to be optimised. Patient experience is widely recognised as a vital contribution to the design, provision and evaluation of healthcare services. This study describes the experiences and healthcare needs of people living with dementia and their carer(s) with regard to the GPN role. These findings can inform strategies to support the GPN provision of dementia care that meet the healthcare needs of people living with dementia and carers.

Data availability

The transcripts analysed in this study are available from the corresponding author on reasonable request.

Conflicts of interest

The authors declare no conflicts of interest.

Declaration of funding

This research contributes to a larger program of work being conducted by the Australian Community of Practice in Research in Dementia (ACcORD), which is funded by a Dementia Research Team Grant (APP1095078) from the National Health and Medical Research Council. Caroline Gibson is supported by a University of Newcastle Postgraduate Research Scholarship from the Faculty of Health and Medicine.

Author contributions

CG conceived the study. CG, DG, DP, AH and MY contributed to the study design. CG drafted the manuscript. CG, DG and DP independently reviewed the transcripts and coded the data, and AH and MY assisted with resolving any discrepancies in the coding. DG, AH, MY and DP provided critical commentary on subsequent versions of the manuscript. All authors have read and approved the final version.

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