Primary care determinants for timely diagnosis of dementia

Abstract

Objective

To identify actions of primary care physicians (PCPs) that influence referral to specialist assessment for dementia from the perspective of people with symptoms of dementia and/or their significant others.

Design

A descriptive qualitative design was used, involving 33 semistructured interviews that explored presenting symptoms, consultations with health professionals, tests undertaken and challenges encountered while navigating the prediagnostic phase of dementia. Interview data were mapped deductively to the Candidacy Framework to examine engagement with PCPs and to identify participant-perceived actions that facilitated or impeded timely diagnosis.

Setting

Online interviews were conducted between August 2022 and June 2023 with participants across Australia.

Participants

Participants were 37 people who had navigated the dementia diagnosis process as a patient or significant other (partner/spouse, adult child, sibling or friend).

Result

Successfully communicating concerns and asserting candidacy was described by participants as determining the diagnosis trajectory. Participants reflected that PCPs assessed available information to determine the need for specialist referral. Participants detailed that following PCP referral and support provision, diagnosis proceeded to a specialist. We also identified participant-reported system-level and PCP-related barriers to facilitating a timely diagnosis, including PCP time-constraints and workload-constraints, dementia-specific knowledge and referral pathway inconsistency. From participants’ perspectives, access to a specialist referral and timely diagnosis was facilitated or impeded by an interplay of actions by people experiencing symptoms, significant others, and PCPs.

Conclusions

Primary care barriers and enablers to timely diagnosis spanned across patient, significant other, PCP and system levels. Recommendations to provide timely, accurate and equitable dementia diagnoses include (1) Raise community awareness of dementia symptoms, helping people communicate their concerns effectively with their PCP; (2) Enhance PCP knowledge of dementia to improve their ability to refer and diagnose and (3) Develop clear diagnostic pathways to ensure that individuals receive the appropriate diagnosis and care they need.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• New disease-targeting therapies for Alzheimer’s disease have increased the priority for timely diagnosis of dementia. The majority of people living with dementia symptoms will present to primary care as the first point of entry into the health system.

WHAT THIS STUDY ADDS

• This study presents the experiences and perspectives of people who have navigated the health system to receive a referral for specialist dementia assessment via primary care and identifies facilitating and impeding actions.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• This study highlights the perceived primary care physician actions that impact access to specialist dementia assessments, with implications spanning research, clinical practice and healthcare policy to facilitate timely diagnosis.

Background

Dementia is one of the greatest global health and social care challenges of the 21st century.¹ Alzheimer’s disease, the most common type, significantly impacts people’s memory, thinking and behaviour.² Other common types include Lewy body dementia, frontotemporal dementia and vascular dementia, each with different symptoms.² In 2019, 57.4 million people globally were affected by dementia, with projections estimating 152.8 million people by 2050.³ This increase aligns with population growth and ageing, despite a decrease in dementia incidence.³

Many people live with undiagnosed dementia. The true number is estimated to be three times higher than those diagnosed, such that it is estimated that 75% of people living with dementia lack access to specific care and treatments.⁴ This indicates the challenges in receiving and documenting a dementia diagnosis. Diagnosing early-stage dementia is challenging due to sociocultural factors, varied clinical presentations and limited screening.⁵ Contemporary literature increasingly advocates for a symptom-driven, ‘timely’ rather than a strictly ‘early’, potentially asymptomatic, diagnosis. This approach recognises that patients and their families differ in their preparedness to engage with clinical care and receive a diagnosis.⁶ It also highlights that the most appropriate time for diagnostic disclosure is shaped by a family’s specific resources, individual values, and broader life circumstances.⁶ When these factors align, timely diagnosis allows access to beneficial interventions like anti-amyloid therapies for Alzheimer’s and symptom management drugs.^7–9 It also enables individuals to use community services, reduce psychological distress for themselves and their families, and make important future decisions, such as nominating a power of attorney and setting advance care directives.^{10 11}

Dementia is diagnosed by medical doctors in hospital, outpatient, and primary practice settings.¹² Primary care physicians (PCPs) are typically the first health professional consulted for cognitive concerns. Their assessments determine referrals for specialist assessment, making them crucial gateways to the healthcare system.^{1 13} PCPs coordinate and ensure continuity of care, minimising specialist service utilisation.^{14 15} However, a meta-analysis across North America, Western Europe and Asia shows nearly 70% of people living with dementia worldwide were not recognised to have dementia by their PCPs, reflecting the combined influence of clinician knowledge and broader policy, system, cultural and educational factors.¹⁶

Numerous complexities make recognising dementia in primary care difficult.¹⁷ PCPs must differentiate between normal signs of ageing and dementia symptoms, a challenging task due to dementia’s varied types and features.^18–20 PCPs need to determine if a patient requires a specialist referral or if symptoms stem from other conditions like depression, delirium, vitamin deficiency or infection.²¹ Furthermore, practitioners must carefully evaluate complex medical histories, such as prior concussions, which are associated with an increased long-term risk of developing overlapping psychological and neurological disorders.²² This poses a challenge as many PCPs report having minimal dementia-specific training and professional development.^{13 18} Some have also questioned the necessity of timely diagnosis due to perceived limited therapeutic benefits.²³

Given the complexity of recognising and diagnosing dementia, this paper explores how people with symptoms of dementia and/or their significant others (partner/spouse, adult-child, sibling, friend) engage with primary care in Australia. This work is examined through the construct of candidacy, a dynamic concept centred around a person’s awareness of whether they are a candidate for a particular condition and the subsequent intervention and services. Candidacy is dynamic and over time an individual’s acceptance may be augmented or challenged. The Candidacy Framework identifies multiple stages of negotiating candidacy to facilitate an in-depth exploration of individual and health service influences on access to healthcare.²⁴ The seven overlapping dimensions of the Candidacy Framework are: identification of candidacy, navigation of services, permeability of services, appearing at services and asserting candidacy, adjudication by professionals, offers of and resistance to services, and operating conditions and local production of candidacy.²⁴ This framework has been utilised to gain understanding of a variety of healthcare journeys and explore complex influences guiding the decision-making of individuals and healthcare professionals.^25–27 This study aims to understand the entry point to specialist dementia assessment via primary care from the perspectives and experiences of people with symptoms of cognitive impairment and/or their significant others.

Methods

Design

A descriptive qualitative study²⁸ with semistructured interviews was conducted. The research question focused on how patients and their significant others engaged with primary care during the dementia diagnosis process, and what actions facilitated or impeded referral to specialist assessment. This study explores the perceived barriers and facilitators to achieving timely diagnosis. The paper follows the Consolidated Criteria for Reporting Qualitative Studies (COREQ) 32-item checklist (online supplemental file 1).²⁹

Recruitment and sampling

Recruitment of participants involved the distribution of advertisements via social media and purposive sampling³⁰ through consumer organisations such as Dementia Australia and research projects including the BetterBrains Randomised Controlled Trial³¹ and the Healthy Brain Project.³² Snowball sampling³⁰ was employed with some participants sharing the invitation with people who met the eligibility criteria. People who had experienced the dementia diagnosis process (regardless of final diagnosis) were considered eligible to participate in this study if their diagnosis journey occurred within Australia, were over 18 years of age, and provided informed consent prior to study participation. All individuals who expressed interest in the study and met these eligibility criteria were invited to participate in an interview.

Data collection

Semistructured interviews were conducted online using Zoom (Zoom Video Communications), with phone calls available if preferred. The interview questions were designed to elicit information on the dementia diagnosis process in Australia, focusing on the health professionals involved, the diagnostic tests performed, the communication between health professionals and the people going through the diagnosis process. Interviews further explored each participant’s perceptions, feelings and experiences, including explicitly asking participants to reflect on beneficial features of their diagnostic journey, areas requiring improvement and recommendations for change. The interview guide is available in online supplemental file 2. Participants were provided with the interview guide prior to the interview.

The interview guide was pilot tested, with modifications made to enable greater exploration of the diagnosis journey. Each interview was conducted by SC, HG and/or DA—researchers trained in public health, health services and qualitative research. None of the interviewers were clinically trained or were involved in the clinical care of participants. Prior to their interview, participants were provided with the participant information and consent form, alongside the interview guide, which detailed the study aims, processes and the academic, non-clinical background of the interview team. Data collection was conducted from July 2022 to June 2023, with the determination of sample size guided by the concept of information power.³³ Supported by a narrow research aim, a semi-structured interview guide, and prior theory (the Candidacy Framework), information power informed recruitment to ensure sufficient data were obtained to address the research question.

Data analysis

Interviews were audio-recorded and transcribed, with transcriptions analysed using a qualitative data analysis programme (QSR-NVivo). First, SC, HG and DA conducted inductive coding to capture participant-driven narratives without predefined constraints.³⁴ Second, HG deductively mapped these inductive codes to the Candidacy Framework²⁴ in close consultation with DA and SC.³⁴ This mapping was highly iterative, with team discussions resolving any coding disagreements until consensus was reached.

Coding, framework mapping and analysis were undertaken by researchers with expertise in public health, health services research, and qualitative methods (HG, SC, DA and ABe). Findings were discussed with the broader multidisciplinary research team, comprising general practitioners (SD and DP), clinicians and researchers across multiple disciplines (ABr, MY, SL, YYL and SA) and individuals with lived experience of the dementia diagnostic pathway (HM and KM). These diverse perspectives informed interpretation by critically challenging assumptions, examining alternative understandings of the data, and refining thematic development.

‘Navigation of services’ and ‘permeability of services’ domains were merged as they showed similar thematic findings in our analysis. All inductive themes ultimately aligned with these adapted domains, though the team remained open to reporting standalone findings to prevent the framework from constraining the data. Deviant cases, such as participants bypassing PCPs via hospital admissions, were actively analysed to challenge the thematic structure and are acknowledged in the 'Identification of Candidacy’ domain.

Because participants tended to discuss difficult experiences at length but were less descriptive about positive aspects, quotes within each domain were explicitly separated into elements of the journey that worked well vs those needing improvement. Finally, HG and AB used summative content analysis to examine transcripts, allowing comparison between instances where the PCP was identified as a barrier to timely diagnosis and those where barriers lay beyond the PCP.³⁵ This summative analysis served as a supportive analytical step to guide our thematic structure, enabling the subsequent unpacking of specific facilitating and impeding actions across the different groups.

Patient and public involvement

The study was informed by a Consumer Advisory Committee (CAC), comprising five people living with dementia and four significant others who were carers (three adult children and one partner/spouse). The CAC reflected a broad range of lived experiences, including culturally and linguistically diverse backgrounds, rural and regional perspectives, and Aboriginal and Torres Strait Islander representation. The CAC was established to integrate the perspectives and lived experiences of people living with dementia and their significant others into broader research on dementia diagnosis in Australia. While prior research involvement experience wasn’t required, all members had previously shared their lived experiences in other studies as consumers. This committee was formed during the planning stages of the research and was consulted on the study design, recruitment, data collection, and strategy to disseminate results. The CAC also reviewed the interview guide prior to data collection and provided feedback on its format, content, and distribution.

During the planning stages of the study, several CAC members expressed interest in participating in an interview. Members were informed that participation was voluntary and separate from their role on the CAC, and that their decision to participate would not affect their ongoing involvement with the committee. Several CAC members were involved in pilot testing the interview guide. In total, seven of the nine CAC members participated in an interview, and their qualitative data, including data generated through pilot testing, were included in the final analytic dataset. To manage the dual role of some individuals as CAC members and study participants, CAC members were not involved in coding interview data or generating findings from the dataset.

After the interview data were mapped to the domains of the Candidacy Framework, de-identified results and thematic structures were provided to the CAC for feedback on the interpretation of findings. Consumer feedback informed interpretation of the findings; however, analytic decisions remained grounded in the interview data. Where feedback reflected experiences or perspectives not represented in the dataset, interpretations were reviewed against the interview data and retained only where supported by the data. Two members of the CAC (HM and KM), one with experience navigating the dementia diagnostic pathway as a patient and the other as a family member, reviewed the manuscript and provided feedback.

Results

33 semistructured interviews (37 participants; 4 dyad interviews) were conducted with people who had undergone the dementia diagnosis process as a patient (n=11), people caring for or have cared for a partner or spouse with dementia (n=7), people caring for or have cared for a parent (n=17) and people caring for or have cared for another family member or friend (n=2; see table 1). The interviews ranged in length from 40 to 75 min.

Table 1. Demographics of participants and diagnosis journeys.

Participant characteristics*	n (%)
Participant type
Person who undertook dementia diagnosis process as a patient	11 (29.7)
Partner/spouse of person diagnosed with dementia	7 (18.9)
Adult-child of parent diagnosed with dementia	17 (45.9)
Other–sibling, friend	2 (5.4)
Sex
Male	9 (24.3)
Female	28 (75.7)
Diagnosis characteristics †
Diagnosis
Alzheimer’s disease	13 (39.3)
Frontotemporal dementia	6 (18.2)
Lewy body dementia	1 (3.0)
Vascular dementia	3 (9.1)
Mixed dementia (Alzheimer’s and vascular)	3 (9.1)
Dementia (subtype not reported)	3 (9.1)
Mild cognitive impairment	2 (6.1)
No dementia/mild cognitive impairment diagnosis	2 (6.1)
Age at diagnosis
≤ 65 years	9 (27.3)
66–75 years	7 (21.2)
76–85 years	4 (12.1)
> 85 years	3 (9.1)
Not reported	8 (24.2)
No dementia/mild cognitive impairment diagnosis	2 (6.1)
Years since diagnosis
Diagnosis 0–1 year	1 (3.0)
Diagnosis 1–5 years	13 (39.3)
Diagnosis 6–10 years	9 (27.3)
Diagnosis 10+ years	6 (18.2)
Unknown time period	2 (6.1)
No diagnosis of dementia	2 (6.1)
State/territory of diagnosis
Victoria	14 (42.4)
Queensland	8 (24.2)
Western Australia	3 (9.1)
New South Wales	3 (9.1)
South Australia	3 (9.1)
Tasmania	1 (3.0)
Australian Capital Territory	1 (3.0)
Northern Territory	0 (0.0)
Metropolitan/rural diagnosis
Metropolitan	21 (63.6)
Rural	12 (36.4)

^*Denominator for participant characteristics is n=37 individual participants.

^†Denominator for diagnosis characteristics is n=33 unique diagnosis journeys.

Figure 1 illustrates the mapping of identified themes to the domains of the Candidacy Framework. The first domain of the framework, identification of candidacy, sits with the person or significant other to identify symptoms and know to seek medical attention. The other six domains examine the perceived facilitating and impeding actions of people experiencing dementia symptoms, significant others and PCPs in achieving timely diagnosis and relevant factors that influenced the process. Themes and relevant quotes for each domain are presented in table 2, with the complete quotes table provided in online supplemental file 3.

Figure 1. Themes mapped to the stages of the Candidacy Framework.²⁴ PCPs, primary care physicians.

Table 2. Identified themes and participant quotes structured across the domains of the Candidacy Framework.

Domain	Themes	Quotes
Identification of candidacy	Recognising need for medical attention	“I said to [my health professional friend], ‘You'll never guess what happened to me. I think somebody’s been in my unit and moved everything around.’ We had a discussion about it, and she said, ‘That doesn't sound very good. I think you need to see a [PCP].’” – Participant 4, Person diagnosed with dementia
	Threshold for candidacy	“He saw the [PCP] only when he had a list that was worthwhile… [The PCP] must have [seen his decline in cognitive function] because she did the referral to the neurologist. That was probably 3 months into the time where we were starting to notice things.” – Participant 22, Daughter “[The signs and symptoms were] quite noticeable, especially with the nursing staff… In those weeks that she was in the [hospital], she was definitely diagnosed with Alzheimer’s.” – Participant 16, Daughter
Navigation and permeability of candidacy	Presence of a regular PCP	“Things were getting really challenging for him… In those months, say three months, he had a good [PCP], had a regular a long relationship with his [PCP] and we subsequently worked with her on his ongoing care” – Participant 22, Daughter
	Absence of a regular PCP	“He'd never had an ongoing [PCP]. Even the [PCP] from when he died who was fantastic and who had seen him for a long time, hadn't known him pre-dementia. There’s those things that if you don't have an ongoing relationship with the medical person, then they don't necessarily do the looking they need to do to.” – Participant 32, Partner/spouse
	Seeking another PCP within the same clinic	“The best thing was [the PCP] left practice and I got a new doctor. [The transition was] done straight away, which was good.” – Participant 5, Partner/spouse “[Mum’s] history didn't really add up. That made me just think I got to find a new [PCP] for Mum, even though she seemed to really like this guy. I did find a new [PCP] in the same clinic. He’s been more helpful.” – Participant 6, Daughter
	Significant others shared their concerns with PCPs	“She was an absolute fiend for books. But then she really stopped reading books. We were going to book club, and she stopped wanting to do that. I was getting bit worried, so I went to the [PCP] and said, ‘I’m a bit worried about this.’” – Participant 33, Partner/spouse
Appearing at services and asserting candidacy	Able to assert candidacy	“We sat around and talked about what was going on and [my wife] was telling him things that I had no idea that I was doing or that I had done it… [My PCP] gave me a referral to [a specialist medical centre]” – Participant 3, Person diagnosed with Mild Cognitive Impairment
	Difficulty to assert candidacy	“I suppose if you really unpick it, our diagnosis wasn't that quick. There were lots of missed opportunities along the way. And some of those missed opportunities could have potentially been the information that [he] was sharing as well… There obviously were lots of things along the way that got missed.” – Participant 28, Partner/Spouse
	Alternative explanation to dementia	“I can understand why our [PCP] didn't pick it up. He did the referrals that [my husband] was asking for, which was to a psychiatrist because he knew he was depressed. But because he didn't know [him] longer term, he didn't know that there was cognitive impairment there.” – Participant 32, Partner/spouse “They don't know her personally. When we say there is something going on and then she presents fine and the history of depression. I can kind of see how, you know. I'm not blaming them at all.” – Participant 11, Daughter
	PCP’s relationship and perception of the person with symptoms of dementia	“When Mom had been seeing [the PCP] over the years, she'd go there, she probably forgets what she was going for, and she was fawning over him because he was the doctor… My observation when I went to the appointments with her was that he just thought that she was a little bit stupid… The implication was she probably doesn't have dementia.” – Participant 6, Daughter “He was a highly functioning man and so he was still presenting, if any medical people would see him, they [said], ‘Oh, he’s great. Look at him, he’s fantastic!’, and I became his advocate and I had to say, ‘Yes, but this is a decline’.” – Participant 22, Daughter
	PCP asking probing questions	“I think a lot of it does come back to the [PCP] asking the right questions… Patients don't offer the information whether they know they’re doing it or they don't know how to offer the information” – Participant 17, Daughter
Adjudication by services	PCP provided an appropriate referral	“How it was done with my primary physician was very good… Herself and another doctor did almost a basic similar type of test… They decided in consultation I needed to see a specialist” – Participant 1, Person diagnosed with dementia
	Delays providing a referral	“[It took] nearly five years to wait for a diagnosis and actually when we went to the [PCP] after [getting the diagnosis], she actually said to us, ‘I thought it might be something like that.’ [PCPs] possibly don't refer on early enough… an earlier intervention might have got us into a recovery and positive lifestyle flow sooner. We're in that now, but it’s a long way down the track” – Participant 37, Partner/spouse
	PCP would take into consideration the concerns of significant others and provide support	“So, I took them to the [PCP] and explained to her that we're just concerned about whether Mum was having some issues. The [PCP] was lovely. Mum had been seeing her for a long time. So, she did a mini mental state test… She wrote a referral for us to take Mom to a [specialist memory clinic].” – Participant 13, Son
	PCP dismissed the concerns of significant others	“The medical profession probably needs to listen to partners when they're talking about things like dementia… or whatever it might be. You know when you're realising there’s something not right. Some of them can be a little bit dismissive” – Participant 5, Partner/spouse “My sister and I went to see a very long-term doctor who had been here for years, who was doctor for both [my parents] and certainly had been her doctor for a long time. We went to see him and [said], ‘We think our mothers got dementia. What should we do?’ He sent us home with a flea in our ear and told us to be nice to our mother and go home.” – Participant 8, Daughter
Offers of and resistance to services	PCPs providing referrals and support	“He was great immediately. He showed compassion. He had empathy. He certainly had a sense and an awareness and he said, ‘We can help. This is what we'll do, and this is how we'll go about doing it.’ Then the heat started to reduce, and I started to feel that something good could emerge from this. We could get some clarity.” – Participant 30, Daughter
	Person with symptoms of dementia refused to engage with dementia investigations	“]Dad] was so resistant. We thought we had this path and I completely empathise with his position, like ‘This can't possibly be happening with me.’ ‘There’s nothing wrong with me.’” – Participant 24, Daughter “We had an MRI [Magnetic Resonance Imaging] and PET [Positron Emission Tomography] scan and getting her to do those things was very difficult. Just didn't want to do it. It was quite an uphill battle to do [the tests].” – Participant 14, Partner/spouse
Operating conditions and local production of candidacy	Time and workload constraints	“My feeling is, whenever you go to see your doctor, they're always on a tight schedule and you always feel like you’re perhaps not too rushed, but you are rushed. You always feel like you don't want to continue longer than you have to.” – Participant 14, Partner/spouse “I think they're doing the best they can with what they've got. They're not out there to dismiss you or whatever. They've got 20 other people they probably need to see that day.” – Participant 11, Daughter
	Dementia education and knowledge	“I was surprised to know that doctors do not have an awareness of what dementia is. They really need to. I find that quite mind-boggling because [the PCP] of course was the key. The emphasis was on the doctor because he is the key to getting anything, any other service.” – Participant 30, Daughter “[PCP’s] need that education… Where they actually know what it is, and they actually can recognise the symptoms themselves in seeing these patients weekly …[PCP’s]need to be more aware. Especially since dementia is now going to be more and more prevalent.” – Participant 34, Daughter
	Lack of a clear, consistent pathway	“I think having a sort of a prescribed process would be really good and a timely process… It is a long journey, and I think it will be great when we get something standardised. I think that that will make a huge difference.” – Participant 4, Person diagnosed with dementia “[PCPs] could be more aware of [the diversity of symptoms], and what to do if [people] had some. Like, ‘What you're saying is odd. These are the tests available.’ Just having that pathway.” – Participant 2, Daughter

PCP, primary care physician.

Identification of candidacy

Identification of candidacy is the precursor to the PCP’s encounter, in which an individual appraises their symptoms as unusual and recognises their need for medical attention. The majority of participants described the symptoms starting off small, initially with alternative explanations to justify the deviation from their norm. However, there was a threshold for when the symptoms could no longer be overlooked. Once that threshold was reached, people experiencing symptoms and/or their significant others acknowledged the need to seek help, with PCPs typically the entry point to receiving medical attention. Depending on an individual’s willingness to accept this medical need, prompting by significant others was often necessary.

Sometimes the threshold for candidacy is first identified by PCPs, either during regular check-ups or when a person presents for a different health issue. The person with symptoms or their family may have previously recognised the candidacy but may not have communicated it to the PCP. In the two cases where the PCP was not the entry point to the healthcare system, other health professionals identified their patient’s candidacy and commenced the diagnosis process. For example, during an unrelated hospital admission, such as an emergency presentation for a fall or a medical procedure for a separate condition, the health professionals administering care noticed symptoms of dementia. These practitioners ordered relevant tests and bypassed the PCP by connecting their patient with specialists.

Navigation and permeability of candidacy

Navigation and permeability of services entail the work required of an individual and the ease with which health services can be accessed. Accessing a PCP required minimal work for many participants, who described a relatively effortless process in booking appointments at local clinics, particularly when participants had a regular PCP. Some participants had “a PCP they’ve been with for many years [who made referrals].” (Participant 35, Daughter) The presence of a regular PCP who had seen a person over time was beneficial for some as they were familiar with a person’s medical history and could provide consistent care. Participants also felt comfortable confiding in PCPs where there was an established relationship, which extended to postdiagnosis care.

However, not all people had a regular PCP prior to diagnosis, meaning that they saw a new PCP whenever they required medical care. The absence of a regular PCP required the person to find a PCP and share their medical history. Sometimes the absence of a regular PCP was attributed to location, the person not needing a PCP previously or due to being new to an area.

Others described needing to find a new PCP due to their regular PCP being no longer available. For many this was a relatively smooth transition with many participants seeking another PCP within the same clinic. However, sometimes a new PCP was sought following dissatisfaction with a previous PCP and a failure to progress towards a diagnosis. Several participants described benefits in starting fresh with a new PCP, where the doctor established a new patient history and assessment of patient symptoms.

Significant others described a tendency for some people with symptoms to minimise or forget to inform their PCP about those symptoms. Therefore, communication between the PCP and significant others was perceived as crucial to receiving a timely referral. Some significant others shared their concerns with PCPs while attending appointments. However, participants reported that not all significant others were welcome to attend medical appointments. In particular, significant others described having to exert considerable effort to share concerns with the PCP, when the person experiencing the symptoms discouraged them raising concerns during appointments or did not want them attending appointments altogether. These challenges required significant others finding alternative approaches to contacting the PCP, such as booking their own appointment with the PCP. This approach may raise confidentiality concerns for the PCP, who cannot discuss one patient with another.

Appearing at services and asserting candidacy

This domain examines a person’s ability to assert their need for medical attention to a health professional. Some participants described being able to assert candidacy by adequately articulating their reasons for seeking medical assistance and credibly communicating their need. One son described how after the family recognised their father wasn’t coping, one family member “suggested that it was dementia-related and had prompted my father’s PCP to do some investigation.” (Participant 25, Son) When participants were able to successfully communicate their concerns, they reported that the majority of PCPs progressed their patient towards the next steps for diagnosis.

Conversely, other participants described the difficulty to assert candidacy and were not able to fully communicate their need. This was often described as the person not sharing all relevant symptoms with the PCP, conveying how their cognition and function was deteriorating. One daughter described her father being proactive with some medical concerns like his vision, yet he avoided discussing cognitive concerns during conversations with his regular PCP. The difficulty to assert candidacy was then perceived to impede the PCP’s ability to facilitate timely diagnosis, which occurred for several participants.

There were instances where people experiencing symptoms of dementia and their significant others initially attributed difficulties to an alternative explanation to dementia. Participants described how other health issues, including mental health conditions such as anxiety were often present and made it difficult to also recognise their candidacy for dementia. One participant described for several years her parent attributing their symptoms to stress and anxiety and received treatment for this. However, the parent’s symptoms further progressed, and it became apparent there were additional health difficulties. The complex interplay of conditions can make it difficult for PCPs to recognise the symptoms of dementia.

Even when a person experienced difficulties asserting candidacy, some PCPs were able to recognise and discuss cognitive concerns with their patients, particularly PCPs with a long-term relationship. Yet some participants felt the PCP had attributed changes in cognition and other symptoms to a variety of other causes, including ageing or even a person’s intellect. A PCP’s relationship and perception of the person with symptoms of dementia could facilitate or impede their recognition of dementia. One daughter described her mother giving the doctor a false perception, by acting in ways that might indicate she wasn’t very intelligent. The daughter expressed that this false impression may have hindered her mother’s assessment process, illustrating how a patient’s presentation can complicate the assertion of candidacy. While many PCPs supported people experiencing dementia symptoms and their significant others to assert candidacy, a couple of participants felt PCPs could do more to facilitate information provision and prompt further disclosure. The PCP asking probing questions was described by many as being crucial for acquiring more nuanced information and eliciting responses to further explore potential symptoms of dementia. Asking nuanced questions was felt to be particularly important in instances where a person may not realise something is relevant. Participants felt that asking the “right” or considered questions, in conjunction with listening to what the patient feels is relevant, is necessary for a PCP to facilitate timely referral.

Adjudication by professionals

Adjudication by professionals relates to decisions made by health professionals that facilitate or impede future access to medical care. The majority of participants indicated that PCPs assessed the symptoms and provided an appropriate referral. This entailed a combination of listening to the person with dementia and significant others’ accounts of what they had noticed and the PCP’s own observations. Sometimes the referral to the specialist was reported as being relatively quick, while other times it took longer due to factors relating to difficulties asserting candidacy.

Some participants reported that it took many appointments before their concerns were acknowledged by the PCP and a referral made for specialist assessment. These delays in providing a referral potentially extended the diagnosis for months. One daughter described knowing that her mother’s symptoms were not simply normal ageing. The participant described difficulties in requesting the PCP to conduct cognitive screening tests for her mother. A further challenge reported by significant other family members was also discrepancies in the symptoms they were observing and the results of cognitive screening at the PCP. If the result of early cognitive screening by the PCP indicated the person’s cognition was at a standard level, many participants described feeling they had limited avenues for further discussions with their PCP. Some participants questioned the utility of some dementia screening tools employed by PCPs, particularly for highly intelligent individuals.

In some instances where the family expressed worries, the PCP would take into consideration the concerns of significant others and provide support. Significant others were very appreciative of PCPs that were willing to work with them to provide care for their family member. One daughter described feeling that her father was no longer safe to drive and was afraid of the potential negative impact preventing him from driving would have on their relationship. The PCP supported the family through the diagnosis process and helped preserve this important relationship.

However, several participants felt PCPs dismissed the concerns of significant others and made the situation more difficult for the person with dementia and the family. Some adult children described scenarios where the PCP suggested they were “terrible” for thinking their parent may have cognitive impairment. This was not only perceived as delaying diagnosis but also making the process considerably more difficult for significant others. This is highlighted by one son who went through the diagnosis process with both parents and experienced the juxtaposition of a PCP willing to work with them and a PCP who wasn’t. These accounts highlighted that a PCP’s attitudes and actions towards the significant other were key factors in determining whether the practitioner facilitated or impeded timely diagnosis.

Offers of and resistance to services

This domain refers to the offers for support or medical care by health professionals and the resistance of individuals to those offers. The main offer of care was the PCPs providing a referral for specialist assessment. While people living with dementia and significant others moved on to the next phase of their dementia diagnosis pathways, PCPs continued to support their patients by guiding people with symptoms of dementia through the process, aiding with any challenges faced and providing subsequent dementia care. Participants described PCPs as acting as a service navigator and care coordinator throughout and beyond the dementia diagnosis process by providing referrals and support.

However, some people with symptoms of dementia were not aware or in denial about their symptoms. As such, they were averse to having tests performed and refused to engage with dementia investigations. One participant described her father’s unwillingness to accept their potential dementia symptoms as the key barrier to diagnosis because he was so resistant to help. In these described cases, the diagnosis was difficult and delayed despite the perception that the PCP was making their best efforts at facilitation.

Operating conditions and local production of candidacy

Operating Conditions and Local Production of Candidacy are the locally specific factors and conditions that influence an individual’s interactions with health professionals. Several participants acknowledged the difficulty PCPs face given their time and workload constraints. One participant described feeling guilty taking up more of a PCP’s time than absolutely necessary given their tight schedule. Some participants recognised this challenge even if they felt the PCP involved in their journey could have done more to facilitate diagnosis.

PCPs were discussed as being a crucial part of the dementia diagnosis process. However, many participants felt it would be beneficial for PCPs to have greater dementia education and knowledge about the different types of dementia and their symptoms. PCPs “know a little bit about a lot of things, but not a lot about specific things.” (Participant 3, Person diagnosed with Mild Cognitive Impairment). There was the perception that PCPs need further support to aid them in facilitating diagnosis, with one participant asking, “Where’s the support for everyone? Even the PCP, he needs support. I just feel that it was a very lonely path.” (Participant 2, Daughter). Participants discussed the benefits of additional dementia-specific support and training for PCPs to increasingly facilitate a course of action in patients where dementia is suspected.

There was considerable variation in the screening tests performed by PCPs, followed by the specialists to whom people were referred. Many participants lamented the lack of a clear, consistent pathway to identify and address early concerns about dementia. They further suggested the benefits in having a ‘standardised’ pathway to support PCPs and make the process from identification of candidacy to diagnosis distinct and smooth. The priority for a clearer pathway was even more pressing for participants who described experiences resulting in delays in diagnosis help-seeking with their PCP. However, one participant discussed that the process is difficult to standardise as it is complex to account for the many manifestations of dementia. “In terms of diagnosis, it is tricky and it’s very much case by case… Standardising of everything doesn’t consider the little idiosyncratic kind of things. My mother is a fantastic example for that, because she didn’t fit the usual or the typical manifestations of who and what the person is or does who might have dementia.” (Participant 30, Daughter). Facilitating and impeding actions identified within the Candidacy Framework domains for each stakeholder are presented in table 3.

Table 3. Overview of facilitating and impeding actions by people experiencing dementia symptoms, significant others, PCPs and the healthcare system at the entry point to the healthcare system.

	Facilitating actions	Impeding actions
Person experiencing dementia symptoms	Visiting a regular PCP Seeking medical attention Sharing symptoms with PCP Engaging with dementia investigations	Minimising or forgetting to share symptoms with PCP Anosognosia (not recognising symptoms of dementia) Attributing symptoms to another condition Not engaging in dementia investigations
Significant others	Raising awareness of symptoms Prompting person with symptoms to seek medical attention Communicating concerns to the PCP Advocating for person with dementia symptoms	Not sharing concerns and insights with PCP Misattributing symptoms
PCPs	Asking pertinent follow-up questions and actively inquiring about a person’s behaviour Taking into consideration the concerns of significant others Recognising potential for symptoms to be dementia Referring patients for specialist assessment where warranted Acting as service navigator and care coordinator	Dismissing the concerns of significant others Minimising symptoms and delaying/blocking referral for specialist assessment Limited knowledge or training regarding atypical dementia presentations and symptoms
Healthcare system	Capacity of local health systems to facilitate therapeutic alliance Additional dementia specific knowledge	Time and workload constraints Diverse knowledge PCPs are required to hold Variation of specialist availability and referral pathways across states and territories, as well as rural and metropolitan

PCPs, primary care physicians.

Discussion

This study explored the prediagnostic phase of dementia in the Australian primary care setting, capturing the retrospective perceptions of people experiencing dementia symptoms and their significant others. Our findings showed that participants perceived PCP actions to often facilitate access to specialist dementia assessments, particularly when practitioners listened attentively, observed behavioural changes, and collaborated with significant others. Conversely, some participants felt that certain PCP actions delayed or blocked referral pathways. For example, participants described frustration over needing multiple visits before receiving a referral. From an objective clinical perspective, however, literature indicates that an iterative, multiappointment approach may be required to safely rule out other causes of cognitive decline and avoid wasting health resources.³⁶

The Candidacy Framework provided a useful conceptual lens to categorise data reflecting participant perspectives on accessing primary care and negotiating referrals.²⁴ Although applying a deductive framework carries the risk of constraining qualitative data or obscuring unexpected insights, the Candidacy domains aligned strongly with our research question and participant-driven themes. Use of the framework enabled a detailed examination of candidacy negotiation, illustrating the dynamic nature of this prediagnostic stage. In the context of the Australian primary care system, the effort required to find a practitioner and the ease of securing an appointment were experienced as integrated steps. Therefore, merging the navigation of services and permeability of services domains provided a more cohesive reflection of how participants negotiated entry into primary care. This consolidated structure also allowed the analysis to successfully map a diagnostic process that contemporary literature highlights as complex and non-linear.³⁷

Crucially, our findings underscore that diagnostic delays cannot be attributed to PCP behaviour alone; rather, they result from a complex interaction of patient, significant other, PCP and systemic factors. At the patient and significant other level, the journey is shaped by the interplay between symptom recognition and disclosure. Participants and significant others reflected that successfully conveying clinical needs and asserting candidacy during initial consultations was critical to establishing momentum in the diagnostic pathway. Conversely, they described some instances where cognitive changes were minimised, forgotten or withheld during consultations. Literature has long documented various patient-level barriers to help-seeking, including the normalisation of cognitive decline, ageism, compensatory behaviours, and psychosocial factors like anosognosia, fear, and shame.^{38 39} In the absence of direct symptom reporting, PCPs face a significant information deficit during short consultations, which literature shows makes the clinical identification of cognitive decline increasingly difficult.³⁷ Furthermore, participants reflected that it must be challenging for PCPs to determine the need for a specialist referral when they do not have a complete picture of functional decline at home. Although long-term patient-physician relationships generally support early detection,⁴⁰ our study found that in some instances, reluctance to acknowledge symptoms persisted even in these contexts.⁴¹ These patient and significant other-level factors represent substantial barriers to diagnosis that exist independently of a PCP’s clinical intent.

Active significant other-level advocacy and supportive clinical partnerships were identified by participants as invaluable enablers that helped families navigate complex diagnostic milestones, such as specialist referrals and driving safety assessments. However, this desired collaboration often clashed with clinical boundaries. While significant others frequently reported frustration when they perceived PCPs as dismissive or unresponsive to their concerns, primary care literature highlights that clinicians are bound by rigid legal and professional confidentiality and consent constraints.⁴² Clinicians cannot openly discuss a patient’s medical status or alter care pathways based on third-party reports without the patient’s explicit consent,⁴² which may contribute to significant others’ perceptions of clinicians as unwilling to act or listen.

Existing primary care literature indicates that PCPs are often motivated to protect and preserve their patient’s psychological well-being and the ongoing therapeutic relationship.⁴³ Within this body of research, however, such protective clinical caution is documented to paradoxically delay formal investigations. Studies examining general practice dynamics suggest that PCPs may navigate genuine clinical uncertainty and experience trepidation about raising suspected cognitive decline, fearing that premature labelling may cause unnecessary distress or fracture patient trust.³⁷ Conversely, fear their concerns may not be taken seriously or the absence of a close relationship may make significant others perceive PCPs as unapproachable and limit disclosure.⁴⁴ This mutually daunting communication landscape highlights the potential utility of emerging objective tools. Integrating blood biomarkers⁴⁵ and digital cognitive assessments⁴⁶ could support PCP clinical judgement and provide objective data to navigate these delicate conversations between patients, significant others, and clinicians.

Participants and primary care literature both highlight that PCPs must manage an extraordinarily diverse medical caseload within limited consultation windows, a challenge further compounded by a widespread need for enhanced dementia-specific training.⁴⁷ Furthermore, local service capacity, extensive specialist waitlists, and fragmented regional pathways across states, territories, and rural-metropolitan divides continue to impede equitable care.⁴² The development of specialised regional online diagnostic pathway tools has emerged as a promising facilitator to guide clinicians through triaging and referral.⁴⁸

Ultimately, PCPs continue to be valued by participants as central coordinators of care who provide essential continuity and ongoing support post-diagnosis.⁴⁹ Recent analysis of Australian primary health networks highlights that this ongoing stewardship is vital for connecting people living with dementia to broader multidisciplinary support, such as allied health professionals.⁵⁰ When PCPs communicated effectively and validated family concerns, participants reported feeling supported throughout their diagnostic journey. To ensure that patients receive the care they need and remain at the centre of the diagnostic process, optimising the healthcare entry point must shift from focusing solely on isolated PCP performance to expanding comprehensive, systemic support. Strengthening primary care capacity through targeted clinical education, objective diagnostic aids, and clear regional referral pathways are viable strategies to support the early identification of suspected dementia and ensure equitable access to specialist dementia referrals and formal diagnosis.

Limitations

This study involved a mixed sample of people living with dementia and significant others of different genders, states, and urban or rural residences. While recruitment aimed to sample across diverse participant characteristics, including people living with dementia, significant others, geographical location, and culturally and linguistically diverse populations, large numbers of participants from diverse populations were not achieved. However, interview accounts did not vary substantially between participant groups. When describing their diagnosis journey, participants tended to focus on negative experiences and offered limited detail on positive or neutral aspects. To minimise the impact of this, quotes within each domain were explicitly separated into those reflecting aspects of the journey that worked well and those highlighting areas requiring improvement, and summative content analysis was used to systematically identify both facilitating and impeding factors across groups. Some diagnoses occurred years earlier, with gaps emerging in accounts of PCP’s role. Significant others were not always involved in the initial stages of the diagnosis, particularly adult children, siblings or friends of the person being diagnosed. Although they may have assisted in recognising the need for assessment, they were often absent from early medical appointments, so their interpretation of that stage may not be accurate. Interviews with significant others explicitly explored their level and timing of involvement, enabling clearer interpretation of when they were active participants in the diagnostic process vs reflecting retrospectively. As all participants had been through the diagnosis process as either a person living with dementia or a significant other, this study offers the consumer perspective but cannot provide a comprehensive picture of PCP engagement in the diagnostic pathway. Participants also did not necessarily understand PCP responsibilities or their ethical and legal obligations. Almost half of the participants received their diagnoses (45.5%) over 6 years ago, with nearly one-fifth more than 10 years ago. Given changes in primary care and dementia diagnosis, these experiences may not reflect current practice.

Future steps

Our findings highlight the need for greater PCP support to facilitate timely diagnosis through clearer action pathways for suspected dementia and improved resources to assist symptom recognition. This will become increasingly critical as emerging biomedical innovations enter clinical practice and increase demand for dementia diagnosis. Dementia-specific training that strengthens PCP awareness of typical and atypical symptom presentation is required to enhance recognition and clinical judgement. Strategies to support timely diagnosis should be integrated into policy and funding models.

Furthermore, this study identifies the need for greater community understanding of dementia symptoms. Improved awareness would support earlier identification of candidacy and better equip people with symptoms and their significant others to assert their candidacy. A PCP’s ability to identify need and determine referral pathways relies on the information communicated by patients and significant others. By increasing public awareness of dementia symptoms, both groups will be better positioned to articulate key information that supports PCP decision making and facilitates timely diagnosis. To synthesise these findings, table 4 outlines practical primary care solutions corresponding to the main barriers identified in this study.

Table 4. Practical implications for primary care based on identified diagnostic barriers.

	Impeding actions	Practical implications
Person experiencing dementia symptoms	Minimising or forgetting to share symptoms with PCP Anosognosia (not recognising symptoms of dementia) Attributing symptoms to another condition Not engaging in dementia investigations	Implement targeted public awareness campaigns to improve community recognition of dementia symptoms and support timely help-seeking. Incorporate prompting questions during consultations to support symptom recall and disclosure, particularly where insight may be limited. Use validated cognitive screening tools, where clinically indicated, to support assessment and identify potential cognitive impairment. Consider validated biomarker investigations, where clinically indicated, available and supported by local diagnostic pathways, to assist dementia assessment and diagnosis.
Significant others	Not sharing concerns and insights with PCP Misattributing symptoms	Develop clear, accessible clinic protocols for safely receiving collateral information from family members while strictly maintaining patient confidentiality and consent. Implement targeted public awareness campaigns to improve community recognition of early dementia symptoms and support timely help-seeking.
Primary care physicians (PCPs)	Dismissing the concerns of significant others Minimising symptoms and delaying/blocking referral for specialist assessment Limited knowledge or training regarding atypical dementia presentations and symptoms	Provide accessible, dementia-focused professional development highlighting the differentiation of typical vs atypical symptom presentations.
Healthcare system	Time and workload constraints Diverse knowledge PCPs are required to hold Variation of specialist availability and referral pathways across states and territories, as well as rural and metropolitan	Implement standardised, localised referral algorithms or digital diagnostic pathway tools to better guide PCP triaging and clinical decision-making. Adapt local pathways according to regional service availability, leveraging telehealth or shared-care models to bridge gaps in specialist access.

Conclusions

Early dementia diagnosis is pivotal for enabling timely access to interventions, informed care planning, and effective symptom management strategies. This study highlights the complex interplay of patient, significant others, PCP, and system-level factors that either facilitate or hinder timely diagnosis at the healthcare entry point. These learnings not only inform strategies to optimise entry pathways but also contribute to the broader evidence base guiding future implementation efforts for equitable and efficient dementia diagnostic models.

Data availability statement

No data are available.