Targets for dementia diagnoses will lead to overdiagnosisBMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g2224 (Published 01 April 2014) Cite this as: BMJ 2014;348:g2224
All rapid responses
We are arguably watching early NHS responses to a consciousness of the wide variability of clinical practice in many areas. It must be uncertain just what balance of benefit and disbenefit will develop from initiatives to influence the variable rates of diagnosing dementia. Neither the local health care settings nor the incentives seem to be uniform. The intentions and zeal of those charged with improving dementia care cannot be faulted, of course, but intentions can only give a direction to the desired improvements. The practical steps will be where any mischief becomes apparent. Currently, it is typical for intentions and interventions to be conflated in political and other initiatives, since there is Media and other profit to be taken merely from declaring intention, with any consequences of intervention yet unknown. To reverse the adage, ‘a thing just begun, is much less than half done…’; indeed, ‘a thing declared, is tactically bared’. The gung ho response of Professor Burns and colleagues might have been more nuanced in this light and eschewed the patronising language of ‘stance, disservice, insulting, retraction into complacency etc’ and undeserved implications of the static acceptance of an unsatisfactory status quo. The costs of ‘going forward’ must be uncertain, regardless of intent and energy (more literally, but improbably, the NHS seems to have managed to fuse a stick with a carrot in ‘quality payments’). There was arguably scope for a more generous approach to the possibility of unintended consequences from initiatives that appear to manifest a variability of their own.
Competing interests: No competing interests
I appreciated Martin Brunet's thoughtful comments on potential harms of over-diagnosis of dementia as momentum gathers for earlier diagnosis of same. This momentum is driven at least in part by commercial interests as he notes. In the U.S., for example, three drugs are now approved for the detection of amyloid in the brain, misconstrued by some as as a way to diagnose Alzheimer's disease. The imaging drugs are groundwork themselves for the up and coming drugs designed to disrupt the amyloid cascade. (The hypothesis for which hope and big bucks spring eternal.)
I thought that Dr. Brunet's "scene," of being pressured to diagnose more people with dementia, to get the numbers up for his district or such, was one from some imagined dystopia, some brave new world of medicine (Aldous Huxley was, after all, a Brit, and set his story in London). To diagnose people to hit some bureaucratic target number is indeed, the most concerning aspect of his article. Perhaps it was satire? Perhaps I'm missing some odd bit of British humor here?
In reference to the commentary by Dr. Burns, I expect that "survey after survey" of those with many chronic diseases may find "palpable dissatisfaction with existing services." Everyone would like more services.
Competing interests: No competing interests
Editor's note: This response has been edited since original publication to take account of the competing interests of Jill Rasmussen. A clerical error at the submitter's end resulted in these being omitted.
Martin Brunet (BMJ 2014;348:g2224) opines that current interest in dementia will lead to harm and over-diagnosis. The current awareness of dementia is a triumph for a concerted approach from patients, carers, the public, professionals, charities, policy makers and politicians. Survey after survey have demonstrated palpable dissatisfaction with existing services, especially the difficulties and delays in getting a diagnosis, the support immediately after diagnosis and ongoing support through the illness. The ambition of people involved in dementia practice and policy is to improve this situation so people with dementia their family and carers feel supported at every stage of the illness.
We have three comments to make on Martin’s stance.
First, barely half of the estimated number of people with dementia have a diagnosis and so it is rather surprising to be accused of ‘over-diagnosis’. It does a disservice to the estimated 300,000 people with dementia who, because of that lack of diagnosis, are unable to access the support they need. Recognising dementia can allow support to be put in place and may prevent avoidable admission to hospital, longer stays and admission to care in a crisis. He cites the situation of Mrs Jones and the alleged pressure GPs will be under to make a diagnosis – she had mild cognitive impairment not dementia so making a diagnosis would not be right and to suggest that colleagues in primary care will over-diagnose if there is a target or even a financial incentive feels insulting. The secret, of course, is to offer Mrs Jones support and follow her up so she feels that the symptoms are being taken seriously and not dismissed. An independent reassessment of the estimated number of people with dementia is taking place, accounting for recent studies (not just the one mentioned by Martin). The next version of the dementia prevalence calculator has been launched, with updated information about care home data.
Second, in some circumstances, the diagnosis of dementia can be a challenge and every thoughtful clinician would accept that occasionally he or she can make an inaccurate diagnosis of dementia or its subtype. The solution to this, of course, is not to retract into complacency but to use this as a vehicle for improving education, improving the interface between primary and secondary care where specialist diagnosis and treatment advice can be more easily available, and to encourage people to reflect on their own practice.
Third, there is a more general point being made about incentives in primary care. Incentives are not compulsory but do deliver investment for extra work. To use dementia as a vehicle to convey a particular mind-set towards one of a number of types of support for primary care feels uncomfortable and does not do justice to the needs of people with dementia and their carers. It is accepted that primary care is under great pressure and it is therefore not unreasonable to provide a financial incentive if additional work is being done.
The debate and the discussion around dementia is important and while we welcome it and look forward to a continued dialogue with colleagues who have a variety of viewpoints, we must move forward and remind ourselves that we owe people with dementia and their carers a better quality of care than they used to get. This can only be achieved by appropriate and timely diagnosis.
Competing interests: Alistair Burns: Advisor on Dementia to NHS England, Editor of the International Journal for Geriatric Psychiatry, received contribution towards travel expenses for launch of Betrinac; received honorarium from Healthcare Education Services for being on the teaching team of Alzheimer’s Disease: Focus on Beta Amyloid course; Chair of Data Monitoring and Ethics Committee for Pimavanserin study in AD Psychosis at Kings College London. Jill Rasmussen: NHS: East Surrey CCG Commissing Lead for Mental Health, Learning Disability and Dementia Strategic Clinical Network SE Coast Dementia Lead Co-developer of MoodHive (Depression Anxiety Pathway) Royal College of General Practitioners Chair Learning Disability Special Interest Group Clinical Champion Dementia Consultancy / Advisory Boards / Speakers Bureau: AstraZeneca, Alzheimer’s Society, Chronos, Lilly, Lundbeck, MGP, Napp, Neuro360, Otsuka, Pfizer, Roche, Servier, Targacept, TauRX