Diagnosis as a collective, cumulative contingent process

One of the most striking findings was that diagnosis was not a discrete act that took place at a particular moment in time, but a collective, cumulative, contingent process.29 Despite the policy focus on the urgency of early diagnosis, GPs gave accounts that drew attention to the slow unfolding of becoming a person with dementia. None of the doctors’ examples involved reaching a diagnosis at a single consultation. The diagnosis would emerge, often over many months, involving not only several consultations but also different combinations of patient and family members, and sometimes evaluations in different locations (eg, surgery and home). GPs talked about ‘taking it slowly, slowly’ or ‘a softly, softly approach’ or ‘chip, chip, chipping away at it’. This involved supporting their patient in the here and now, supporting the patients’ sense of identity and helping them manage their relationships with spouses and children. Helping ‘the person’ (rather than focusing on ‘the label’), finding out their concerns and those of their family was the starting point of their decision-making, not necessarily the issue of making a diagnosis: “I look after you, you are my concern and less of a concern is which label I use for what you have” (Informant 6).

Box 1 is a GP's account of her experience with a particular patient (whom she described as ‘very competent’) whom she had looked after for about 15 years. The patient was in her 80s and lived alone, with a son and other relatives nearby.

In this account, the doctor starts by describing her ‘curiosity’ when the patient missed appointments, a curiosity contingent on her long experience of looking after this patient and a keen sense of ‘knowing’ her. Her curiosity is given further weight when relatives (it later transpires it is her son) call and express concerns. The GP ‘eventually’ arranges to visit the patient, to ‘have a chat with her, do a mini mental test and think about what we needed to do’. There is no sense of urgency in this account, rather attention to working with the patient (she uses the inclusive term ‘we’) to think about what is needed. She describes this as ‘having a chat’ suggesting that it is a relatively informal process at this stage. The GP's account acknowledges implicitly that this ‘chat’ is actually a potentially difficult conversation, in this case made ‘much easier’ (emphasised three times) by knowing the patient over many years. The GP makes a thorough assessment of the patient in their home environment. Although this included a Mini-Mental State Examination, the GP's narrative focused primarily on her evaluation of the patient's ability to manage in the home. In this particular case, the house is ‘absolutely fine’, and the GP attributes this to the care of the ‘very concerned family’.

The GP then steps back from this particular case, but draws on it to explain that for many patients there is a need to address their fear of losing independence, an issue which several of our GP informants identified: “what's really important is to be very clear, to take it really quite slowly.” In direct contrast to calls to make the diagnosis as early as possible, this GP says she would never (in circumstances such as those she uncovered in her evaluation of this particular patient) suggest the memory clinic at this stage ‘because you really have to work at that a little bit’. Respecting the patient's wishes, and with due acknowledgement that the patient was neither lacking competence nor at high risk, the GP decides ‘you just have to patiently wait’. The important question for this GP reflecting on this particular case was not firming up a diagnosis of dementia, but exploring how the patient is coping and ensuring she is safe.

The GPs in this study emphasised the diagnosis as process often using a journeying metaphor, and positioning themselves as ‘fellow traveller’ in this journey: ‘we take this together’ or ‘come, we take one step at a time’ and even ‘fasten your seatbelts’—the latter indicating a somewhat unpredictable course. The process of diagnosis is cumulative, a bringing together of different strands over time, and whether a ‘formal’ diagnosis is reached depends on contingencies such as the wishes of patient and family, the availability or need for local services and a weighing up of different priorities in the care of the patient as a whole. Consistent across our dataset was the observation that the GPs saw the act of making a formal diagnosis as secondary and relatively unimportant alongside the many other roles that the GP played in this situation, such as opening up a conversation, establishing the possibility of future conversations, helping to negotiate the future and ensuring a patient is managing and is safe.

Taking care to ensure that the diagnosis—if it is reached at all—is opportune

The ancient Greeks distinguished between two different concepts of time—chronos (Χρόνος) and kairos (καιρός). Chronos is the most familiar concept of time and refers to chronological time (eg, clock time, date and year) and notions such as ‘early’ or ‘late’—with their inherent moral implications. Kairos encapsulates the sense of there being an opportune or ‘right’ time, a time which aligns with a particular set of contingent circumstances (Kairos, in Greek mythology, was the personification of Opportunity). Timeliness was something that GPs defined much more in terms of kairos than chronos. There were several ways in which GPs described their reasoning of what they considered to be appropriate or opportune time. For example, GPs referred to weighing up what help a diagnosis might bring with the negative consequences of a label in terms of patient's identity and sense of independent autonomous self.

In box 2, a GP describes his dilemma in a situation where he and the patient's wife suspect that the patient has dementia. The dilemma hinges on when the right time for reaching a formal diagnosis might be, and on weighing up the potential costs and benefits in a context where he suspects the patient would be ineligible for free social services support as the available services are means-tested (‘Here's a menu, you can pick and choose and pay for it yourself’). The patient (described as ‘high functioning’ prior to his recent deterioration) is in his eighties, and his wife whom the GP describes as ‘pretty much joined at the hip’ is in her 70s. The GP sets the scene for his account by explaining how the story he hears from the patient when he attends surgery with his wife (‘I'm fine…there's nothing wrong with me’) is a very different story from that which he hears from the wife when she attends separately. He expands on this in box 2. The first part of this account bears some similarities to that in box 1, in that the patient does not himself show interest in pursuing the diagnosis.

In this account, the doctor is GP to the patient and his wife, a role which enables unique insight into different perspectives on the patient's situation, but which also brings its own complexities in terms of managing relationships, balancing the needs of different parties and recognition that the question of ‘Who is the patient?’ is shifting and contestable at different times and in different contexts. The patient's wife emerges as the more dominant character in the narrative, at the same time the one on whom the patient is utterly dependent, who ‘does everything’ and yet who may herself be vulnerable. Indeed, much of the narrative is about attending to her needs as the carer, as the GP considers whether and how a formal diagnosis might secure her some additional support. This is a delicate act of negotiation, one which acknowledges, on the one hand, the need to respect the patient's autonomy and resist a coercive paternalistic approach and, on the other hand, the risk that a poor judgement might result in a ‘crisis’. Mainly, the ‘struggle’ here is not with diagnostic uncertainty. The GP refers on several occasions to the patient ‘dementing’, a choice of words which links back to the notion of dementia as a process of becoming—but the struggle is in how to ‘get the patient to come around eventually to having an assessment’. It cannot be rushed, and involves delicate three-way negotiation between the GP and (two) patients.

‘Telling’ or ‘disclosing’ the diagnosis (or recording it in the medical notes) was symbolically a very different act to ‘making’ the diagnosis, and meant something different to simply ‘knowing’ that the patient had dementia. In the example given in box 2, the GP says that he and the patient's wife believe the patient is dementing. Likewise, the GP quoted in box 1 said that she had chosen this particular example as interesting “because I think I picked up this dementia relatively early [chronos] because I knew her very well…I knew there was something odd that she didn't attend,” while at the same time she has not (yet) made a formal diagnosis but is being ‘patient’ and waiting for the right (kairos) moment. There is a tension maintained between ‘knowing’ and ‘not knowing’ the diagnosis. Towards the end of her interview this GP said “I don't think I ever used the term dementia with her…I wouldn't say that I didn't give her a diagnosis, but I didn't give her a label. It's not the term in itself, it's what does it mean to this patient?” (Informant 3).

A different GP gave an account of a patient who attended an appointment with a family member and began by announcing “Before we go any further, I just want to make it clear that I don't want you tell me that I've got Alzheimer's” (Informant 7). Two consultations later, and with some preliminary investigations completed (a mini mental test score and blood tests) which pointed to a likely diagnosis of dementia, the patient declined an offer of a specialist opinion into her ‘cognitive difficulties’, the GP commenting “I was sure after two consultations that she was able to make her own decision about whether or not she wanted to pursue being investigated further. She went a little way, but at this point she elected not to take it any further.”

All these examples bring a very different perspective to the idea that GPs are displaying ‘grim fatalism’ in not necessarily diagnosing early but are making considered judgements about the difference in meaning between the diagnosis per se and the disclosure of this diagnosis, between ‘recognition’ and ‘diagnosis’.19 Precisely what constitutes ‘diagnosis’ is at issue, especially in the context that the ‘symptoms’ are usually those expressed by people other than the index patient themselves.

Mol,30 in her ethnographic study of the diagnosis and treatment of atherosclerosis, suggests that in order to make a diagnosis “…two people are required. A doctor and a patient. The patient must worry or wonder about something and the doctor be willing and able to attend to it” (p.23). She also describes diagnosis as a composite activity, in which there is a complex inseparable relationship between the detection of disease and the planning of its treatment—the former does not occur without regard to the latter, but neither does it precede the latter, rather they are intertwined practices.31 Previous research has shown that the treatments available for dementia are perceived by GPs to be of questionable benefit,11 ,17 ,18 ,21 a finding supported by our study. In none of the stories told by our participants were the ‘requirements’ Mol asserts as necessary to support a disclosure of diagnosis coming together at the same time and place.

Diagnosis of dementia as constitutive and consequential

Heath has described diagnosis as a doorway between the past and the future. “The process of diagnosis assesses past events and present state and then uses these to predict a future” … “A diagnosis changes the future” (ref. 32, p.63). Similar sentiments are expressed by Rosenberg,29 who on the subject of disease categories argues “once articulated, such bureaucratic categories cannot help but exert a variety of substantive effects on individuals and institutional relationships” (p.254). This coming together of past and future at the moment of disclosure of a diagnosis, combined with an expressed notion that the consequentiality of the diagnosis trumps the urgency of diagnosis, seemed to hinge primarily on the unpredictability associated with dementia. GPs were cautious about ‘predicting the future’ and were more concerned to follow what they perceived to be the ‘right’ course of action in the present. They spoke about ‘being with the patient’ and helping patients ‘on that day’ while at the same time acknowledging the importance of opening up possibilities for future conversations.

Several respondents made (unprompted) reference—explicitly or implicitly—to government policy and national guidance on the diagnosis of dementia. They drew on this rhetorically, not by way of backing up their own decisions on how they had acted in particular situations but to highlight and contrast it directly and deliberately with their own decisions not to disclose a diagnosis in particular situations, framing this as a careful act of consideration of numerous competing and (sometimes) incommensurable concerns: You have to be responsive…you have to, all the time, be thinking in a number of prongs as it were. What does the evidence say? What does the patient want? (Informant 3) There's got to be a good reason to want to do it, rather than just the, sort of, sake of labeling somebody—which would be great, you know, because then we'd get points for the dementia register. So in that sense there's a huge conflict of interest to just diagnose lots and lots of people and [name of region] has a particular problem with not enough demented people based on the current calculation…so there's lots of incentives to just diagnose people, but there's not much point. (Informant 2)

This respondent's (Informant 2) reluctance to ‘just’ diagnose people (the word ‘just’ appears three times) is embedded within a statement in which he draws attention, with irony, to the conflict of interest presented by certain aspects of current policy—the availability of incentives being not a ‘good’ or sufficient reason to ‘label’ somebody.

The extract shown in box 3 is taken from a narrative interview in which one of our respondents wrestled openly with the range of different possible consequences of disclosing a diagnosis. The GP had seen a Nigerian patient (with her daughter—the patient's carer) and explained how the patient had become ‘quite mute’ after the death of her son, a response which he said he had experienced before in other African patients. The patient's continued withdrawal and memory difficulties might point towards several possible diagnoses, of which dementia was one.

As with the example in box 2, the GP identifies the process of diagnosis as a type of negotiation, but extends this to the concept of negotiating not only the diagnosis but ‘a future’. He reflects on the diagnostic label as a warrant to receive future support services which are otherwise more difficult to access, but—in a rhetorical move which likens the gravity of this label (the ‘D’ word) to that of cancer (the ‘C-word’)—he goes on to describe this label as ‘nasty’ and suggests that it is the restrictions on access to support services that ‘forces’ him to consider attaching such a label, rather than considerations about her rehabilitation needs per se (or what he later refers to as ‘supporting the person’). He positions himself as somewhat coerced to take particular courses of action (‘the rehabilitation process forces me’; ‘stupid blood tests’). His struggle with the extent to which he is enabling and constraining the patient's future is captured in his juxtaposition of words in this sentence: “…it was also opening doors to an enabling perspective to put something under, to put a jar with a lid, with a big ‘D’ written on it, thinking it helps accessing services.” Diagnosis comes at a cost (the ‘down side’) to the person—‘labelled’ ‘pestered’, the threat of ‘destroying positive outlooks’. A striking feature of this narrative is the GP's rich use of metaphor. The patient was described as ‘mute statue’—imposing and significant, and yet also visibly powerless in her muteness, and the doctor as the orchestral conductor, working to bring together different concepts within an institutional script that, nevertheless, imposes constraints on what is possible for him to do.