Conducting an emotional debate about a diagnosis of dementia in primary care will fail

It’s now clear that much dementia policy in England quite simply has appeared from nowhere.

It has the veil of consultation, but we all know there has been little dialogue about the case-finding approach for people with dementia. There has been virtually no academic scrutiny of the dementia prevalence calculator.

I do not believe that the solution of a workable policy will be won through the pages of the British Medical Journal, especially when it is alleged that certain authors either have little clinical experience in dementia (and graduated in a humanities subject) or others are not disclosing their potential conflicts of interest. In as much a debate is waged in the academic journals, it nearly always becomes a ping-pong of article, reply and counter-reply. It possibly serves no real function other than to massage the egos of the people involved in the debate.

Public dissatisfaction with services is for a number of reasons. There’s a perception that complaints aren’t acted upon. The 2009 national dementia strategy for England “Living well with dementia” is very clear about the need for the diagnosis of dementia to be in the right hands.

See page 37.

“The message from those responding to the consultation exercise was that these are reasonable concerns, and that the primary care role should be that of identifying those with worrisome symptoms that might mean that their patient has dementia, excluding any other explanatory disorder, and referring on to a specialist service for that individual to receive a definitive diagnosis, not only of dementia, but also of the sub-type of dementia. This would require that such services are available for the GP to refer to and, in the large majority of the country, this is not currently the case. The focus of old age psychiatric services is on the severe and complex end of the spectrum, leaving early diagnosis and intervention largely unaddressed. Equally, geriatric and neurology services are saturated at present with their current work with those referred to them with dementia and complex physical co-morbidity and younger and atypical presentations respectively. This strategy is not intended in any way to minimise or undermine the role of primary care in the diagnosis and management of people with dementia. It is instead an acknowledgement of complexities that have become apparent in the last 10 years, and is designed to support primary care by generating services that they can use in a clear explicit care pathway. The primary care role following diagnosis can therefore be informed by the clinically important information as to whether or not that person has dementia, and of what sub-type, and treatment modified to take account of that. “

We need to know how easy it is for GPs to refer concerns about dementia onto specialist medical services, however defined.

It’s very difficult to ascertain what harm takes place through an incorrect diagnosis of dementia – though this is undoubtedly a concern, it is unlikely this would command a headline in the Telegraph or an editorial in the Lancet. It is simply not the case carers feel supported by the greater awareness of dementia. The G8 Dementia Summit barely mentioned carers, as it was intended to address the concerns of Big Pharma in finding a new market for new dementia drugs primarily.

At the end of the day, it is a race to the bottom to be satisfied with any degree of dementia awareness. We need to think about what type of awareness we are achieving? Are people actually better off in their understanding of what the different types of dementia are? Are people clear that the anti-dementia drugs known as cholinesterase inhibitors have a limited time window for some modest therapeutic impact on symptoms, with having no consistent proved impact on slowing the progression of disease?

Another ploy used is to harness the confusion of what a ‘memory clinic’ might be, and what support is available. It is now known a lot can be done to promote living well with dementia, but the medical profession is perhaps not best placed to do this, relying on some medications which simply don’t work well. It might be better to use the term ‘specialist clinical dementia services’, because then at least we get round the heterogeneity of what a ‘memory clinic’ is. A memory clinic might be one psychogeriatrician, or it might be a full blown multi-disciplinary clinic, hosted by a neurologist, general medical physician, social care worker, clinical psychologist, or psychiatrist to name but a few.

There has to be some sort of ‘third way’ between a 10 minute ‘chat about memory problems’ and the full tertiary referral unit workup of 2 x history, 2 x examination, CT, MRI, cerebrospinal fluid/lumbar puncture, psychometry, EEG and (very rarely) a brain biopsy.

There should be an easily identifiable mechanism for GPs to refer to those people best placed to make a working diagnosis of dementia, otherwise talk of diagnosis and ongoing support is simply going to promote anxiety if no such support is available. Just because diagnosis of dementia might be at floor level is not a carte blanche to produce lots of incorrect diagnoses of dementia. To say it should be a good way to encourage education is to combine an Aunt Sally approach with motherhood and apple pie. And we have to be clear why a diagnosis of a subtype of dementia does matter at all, and not in any way luxurious. This should be a basic demand of the English dementia policy. Some people, misdiagnosed as having Alzheimer’s disease, in fact have diffuse Lewy body disease, and can behave particularly badly in response to antipsychotics.

The notion that this policy merits incentives should be aggressively questioned. Any implications that GPs are complacent end up sounding like a patronising slur on a professional arm of the medical profession, whoever makes them. There is no doubt that primary care in England is under strain. Producing lots of cack-handed diagnoses of dementia, with insufficient resources in specialised medical dementia clinics, is not the correct solution. Rather than adopting a ‘there is no alternative’ approach, opinion and clinical leaders have a long way to build up trust over a failing dementia policy in England.

But sadly I do expect this potentially flawed policy to continue.

But to amuse myself, I will put in a freedom of information request to find out how much NHS England has budgeted for specialist clinical dementia services, in response to the anticipated increase in ‘potential’ dementia diagnoses being made in primary care.

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