All interviews were conducted between December 2012 and March 2015. GPs practising in Amsterdam were interviewed between December 2012 and March 2013. After analysing the data, a number of rural GPs were interviewed to explore whether differences in local diagnostic arrangements have important consequences for the decision to refer or not. These interviews were performed between December 2014 and March 2015. All 18 GPs who were invited agreed to participate. The characteristics of the participating GPs are presented in Table 1.
Diagnosing dementia in general practice
The role of GPs in the diagnosis
GPs stated that their role in dementia care consisted of recognising cognitive problems and initiating the diagnostic process, either by making a diagnosis themselves or by referring the patient to a specialist:
‘Picking up the signals … and then deciding if you can diagnose and advise that person yourself or if you need to refer.’
(GP10)
GPs would only pursue a diagnosis when patients’ cognitive limitations began causing problems in their overall functioning:
‘The other day there was a lady who said: “I’m a bit forgetful”. But I won’t do anything with that, because I think it will be alright, she is still functioning well, she still has a clear mind.’
(GP2)
‘When I think: this might give problems with medication and all that, I’ll do something.’
(GP2)
GPs were worried about the timing of the diagnosis. They felt a hasty diagnosis could be stigmatising rather than beneficial for patients:
‘When they get that label “dementia”, they can really suffer, because they are afraid of what is going to happen.’
(GP11)
The need to have a formal dementia diagnosis
GPs did not always feel that it was necessary to have a detailed and specific diagnosis. They argued that a diagnosis was only useful if it had consequences for treatment or care:
‘When people have to deal with their cognitive limitations, one should anticipate and meet their care needs. I think that’s the key.’
(GP5)
‘I don’t know whether that [diagnosing people] is so important for delivery of care or counselling.’
(GP9)
‘For me it often has little consequences to know exactly whether it is this or that … the medication only works in very few people anyway.’
(GP6)
GPs indicated that, with increasing age, cognitive decline becomes more and more common, reducing the value of a formal dementia diagnosis:
‘If it is a very old patient and it all happened very gradually ... then I don’t take immediate action.’
(GP12)
Very old patients (>80 years) were often not referred to specialist outpatient clinics due to the impact of such visits and the lack of additional therapeutic value:
‘For the very old people I do not see much value of a referral, because we can also do a lot for them ourselves.’
(GP3)
‘I hardly ever choose to refer to the hospital, because there is no additional value. Well, they can make nice images, or label it.’
(GP18)
If older patients already had sufficient home care, GPs also tended to not refer them to a specialist:
‘If people already have a lot of care and they are deteriorating, then I do a lab test and the Minimal Mental State Examination (MMSE). And if it [the cognitive function] has deteriorated, but there is already appropriate care, I wouldn’t refer them to the memory clinic.’
(GP2)
The need to know the type of dementia
Recognising certain forms of dementia was considered relevant because this would have consequences for treatment:
‘Well, only for vascular [dementia] of course, you can treat the underlying cause as well …’
(GP10)
‘Well, it can be important sometimes when it’s not Alzheimer’s or vascular dementia .... in cases where you can’t give haloperidol; for example, Lewy body [dementia].’
(GP11)
Some patients wished to know the exact form of dementia themselves:
‘Well, people want to know what it is. Is it due to hypertension or vascular damage? They want to know, so there is a label.’
(GP10)
GPs differentiated between the different forms of dementia using the patient’s history and the course of the disease:
‘There are people who have cardiac and vascular problems, then you think: this will probably be a vascular form.’
(GP7)
‘Yes, I think that if someone does not have other cardiovascular risk factors and the onset is insidious, then [it is Alzheimer’s dementia].’
(GP4)
However, GPs also mentioned not always feeling capable of discriminating between different forms of dementia:
‘If you would like to know exactly what it is, then you need to refer’
(GP8).
‘It is difficult to do that without a CT scan.’
(GP6)
Factors that make a dementia diagnosis difficult
GPs mentioned several problems when trying to make a dementia diagnosis. One difficulty was when the patient or their family appeared to not want to know the diagnosis:
‘Well, one man denies it completely … and a partner who also really covers it up. So they do not want it.’
(GP2)
Furthermore, several limitations in the use of diagnostic tools were mentioned. For instance, GPs could not use the screening instrument for dementia for all their patients:
‘There are people for whom the MMSE is difficult, due to language problems, or illiteracy, or who are struggling with some questions or calculations.’
(GP9)
‘Often there are also some hearing problems, or people become quite nervous about doing the test.’
(GP9)
They also found that the MMSE is not sensitive enough for clinical practice:
‘I think the downside of the MMSE is that scores stay high for quite a long time, even though you notice that someone has really changed.’
(GP2)
A final problem related to differentiating dementia from other diagnoses, in particular from depression:
‘It is often difficult to recognise depression in the elderly and also to distinguish it from dementia.’
(GP11)
Motives for diagnostic referral
Some GPs referred patients to obtain diagnostic certainty, if it would have serious consequences for patients and their relatives:
‘It has a lot of impact, such a diagnosis. So in that sense it is good that it is confirmed by a specialist.’
(GP12)
They also mentioned the broader range of diagnostic tests that were available in the outpatient clinics:
‘It gives some more information on where the gaps are, because they simply have more questionnaires, they do much more.’
(GP1)
‘And in particular the neuropsychological examination, that simply adds more to what I can do.’
(GP1)
Age was an important factor for the decision whether or not to refer. GPs tended to refer ‘young patients’ with cognitive problems to exclude other causes for cognitive decline that could have important consequences for treatment or prognosis:
‘Of course it is unusual when someone shows these symptoms at a young age. You want to exclude that there are other things that are important for the prognosis, so then you’ll refer sooner.’
(GP 10)
‘I have referred a young patient to the neurologist, who appeared to have Parkinson’s disease.’
(GP16)
The potential benefit of medication and the future prospects for this group of patients were also mentioned:
‘For a young person it is a distressing disease, and that is of course terrible … then you absolutely want to make a distinction, and then you want to refer them to the neurologist, who can, among other things, start medication.’
(GP6)
GPs also mentioned the need for a proper diagnosis, so patients and their family could prepare for a life with dementia:
‘There is the opportunity that someone can now define what he wants or doesn’t want [for the future].’
(GP5)
‘At that point that’s the reason for me to discuss that it might be Alzheimer’s disease, and that it has a very slow decline, that at some point you will not know how you used to think about life and the end of life.’
(GP3)
Furthermore, a dementia diagnosis can initiate counselling on treatment, care expectations, and advance care planning; for example, (non)-resuscitation.
GPs indicated that requests for a specialist diagnosis often came from the patients themselves, family members, or local care providers (case managers):
‘But people often want to be referred … and particularly if the partner or family demands it.’
(GP6)
GPs accepted this as a reasonable request:
‘Well, if the children would like to see it diagnosed that way, then that’s fine.’
(GP2)
They could also see a therapeutic reason for referring patients to specialists:
‘It can also be part of the coping process, or give clarity.’
(GP2)
GPs reported different experiences with the role of case management programmes in the diagnosis of dementia. In general, GPs practising in the city reported their patients had to have a diagnosis of dementia, sometimes confirmed by a specialist, to obtain appropriate care from a case management programme:
‘You are actually more or less forced by the case management to refer people.’
(GP2)
‘We also have case managers for dementia who are active around here. In the past, if you wanted their services, they wanted to know the exact diagnosis [or they would not be reimbursed].’
(GP4)
GPs working in rural areas could also refer patients with cognitive problems who did not have a clear diagnosis yet to case management programmes. They often even used these locally available ‘dementia teams’, consisting of case managers (nurses) and an elderly care physician, as a second opinion to confirm their diagnosis:
‘We can turn to the case managers when we suspect dementia. They can do diagnostics and also organise care and handle housing issues.’
(GP17)
‘They [the dementia teams] are a kind of a second opinion. Does the patient indeed have Alzheimer’s disease or is there more or something else? And simultaneously: is more help required?’
(GP16)
Dementia diagnosis in the future
When asked about the way GPs envisioned their future role in the diagnostic process, some GPs reported they would like to have a more prominent role in the diagnosis of dementia:
‘Well, I would be happy if we could have an accepted, valid instrument and then we could make the diagnosis ourselves. I certainly feel, when we think about cost saving and fewer referrals to secondary care, that it is really useful if we were to do this.’
(GP8)
To achieve this, they expressed a need for valid, practicable tools for the general practice setting:
‘If we could be supported by guidelines and checklists, I think we would feel somewhat stronger and more confident, and we would [more often] not refer.’
(GP6)
GPs foresaw some difficulties in increasing their diagnostic role within primary care, mainly based on lack of time and diagnostic support:
‘Well, I think it’s nice when you can do it yourself, but because it is an essential diagnosis, I think you really need reliable diagnostic tests. And I think that takes a lot of time.’
(GP9)
GPs stated that more efficiency in the diagnostic work-up may be achieved by a closer collaboration with specialists:
‘Maybe in the future we can do consultations together with specialists in general practice.’
(GP10)
A solution to the time-consuming nature of diagnosis could lie in delegating some of the diagnostic testing to trained nurses:
‘I think in future more work will come to primary care, with more specialised nurses who now already help us with our care for patients with somatic diseases [cardiovascular disease, chronic obstructive pulmonary disease, and diabetes mellitus]. I can imagine in future they will also help with this [dementia diagnosis and care].’
(GP15)
Some GPs felt reluctant to do so because of financial barriers:
‘It’s difficult to take action as a GP. Should I really invest in a nurse who can assist in diagnosing dementia and make care plans? You can never be sure that things won’t be cut back after 1 or 2 years.’
(GP14)
Improved collaboration would also require guidelines on referral criteria:
‘I think it is very important to have agreement on this. The neurologists and psychiatrists should make a clear directive: these are the people we want to see for diagnostic purposes, and for the other patients the GPs can organise the work-up and support themselves.’
(GP5)
Some GPs were satisfied with their current diagnostic role in dementia and did not feel the need for improvement in the future. However, they foresaw more problems in the care for patients with dementia in the future due to an increasing number of patients with dementia but a declining number of places to house them:
‘So the major problem will be that people with dementia may live at home for a long period of time, but when things collapse, there is actually no solution. At least, not a humane solution.’
(GP17)
