Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis
BMJ 2013; 347 doi: https://doi.org/10.1136/bmj.f5125 (Published 09 September 2013) Cite this as: BMJ 2013;347:f5125
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Martin Brunet raises the issue of the figures around dementia, in particular the diagnosis rate which is often expressed as a simple percentage. The numerator for the rate is the annual return made as part of the Primary Care Quality and Outcomes Framework (QOF) process and the denominator is the estimate of the number of people with the diagnosis (the estimated prevalence). This figure is based on the best evidence of prevalence based on the latest epidemiological information, with the Delphi consensus method taking account of all published studies, so generating an estimate of prevalence that is balanced rather than “questionable”. Whatever the overall national rate, there is still a significant variation between different areas of the country.
The Cognitive Function and Ageing Study (CFAS II, 1) and European ALCOVE project (2) have suggested the prevalence may be lower than previously thought. NHS England and the Department of Health are working with academic and clinical colleagues, together with the Alzheimer's Society and Alzheimer's Research UK, employing the same Delphi technique as previously used (3), to establish a consensus as to whether the figure should be amended.
If we find the prevalence of dementia is actually less than we thought, this is surely a cause for optimism and celebration. Using the CFAS estimates, the absolute effect on the recognition rates estimated would be very small so it would remain the case that around a half of all cases of dementia remain undiagnosed. Our concerns therefore should not be seen as “misleading”. Dementia remains very common, very expensive, and profoundly negative in its impacts on people affected and their families. Population ageing will double the numbers with dementia worldwide in the next generation (4).
In terms of the stage of the illness at which the diagnosis is made, it may be cold comfort to people to know that their diagnosis will appear at some point during the illness. We should be moving towards giving a timely diagnosis to people when interventions and support for patients, their families and their carers can improve quality of life for everyone. Whatever technical argument Brunet makes about when the diagnosis is made, in an attempt to undermine the main thrust of the debate, to have less than half of people diagnosed at any one time (figures out for 2012/2013 last week) should be a great cause for concern.
Rather than arguing about the details of the statistics, surely it is better to grasp the mantle of what they indicate and get on with the challenge of improving the care for all people with dementia and supporting their carers.
Alistair Burns and colleagues
1. Matthews, F. E. et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. 6736, 4–11 (2013).
2. http://www.alcove-project.eu/
3. Knapp, M. & Prince, M. Dementia UK the Full Report into Prevalence. Alzheimer’s Society (2007)
4. Banerjee S. Good news on dementia prevalence—we can make a difference. The Lancet 2013, 382, 9902, 1384 – 1386.
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; Sube Banerjee: Has received consultancy fees, speakers’ fees, research funding and educational support to attend conferences from pharmaceutical companies involved in the manufacture of antidepressants and antidementia drugs, and has been employed by the Department of Health for England; Peter Connelly: Has run a case-finding service for dementia for the past two years as part of a Scottish Dementia Demonstrator site development; Derek Hill: Employed by a company working on a project involving dementia diagnosis; Jeremy Hughes: Is the Chair of National Voices and the Co-chair of Dementia Friendly Communities Champions Group (PM Challenge on Dementia); Gill Livingston: Funded by the AS to do an RCT on increasing timely diagnosis; John O’Brien: Has been a consultant for GE Healthcare, Bayer Healthcare, Lilly, Cytox and TauRx and has received honoraria for talks from Pfizer, GE Healthcare, Eisai, Shire, Lundbeck, Lilly and Novartis; Peter Passmore: Received honoraria, clinical trial support and assistance with attendance at meetings from Pfizer, Eisai, Janssen, Shire, Lundbeck; Jill Rasmussen: RCGP Clinical Champion Dementia, Member of the Alzheimer's Disease Society GP Advisory Group, Surrey PCT Clinical Lead Learning Disability, East Surrey CCG Lead for Learning Disability and Dementia, Co-developer of MoodHive (Depression Anxiety Pathway), RCGP Chair Learning Disability Special Interest Group, Consultancy / Advisory Boards / Speakers Bureau: Autism Therapeutics, AstraZeneca, Alzheimer’s Society, Chronos, Lilly, Otsuka, Pfizer, Roche, Servier, Targacept, TauRX.
Martin Brunet (Rapid response 31st October) adds an important point to the timely and perceptive critique of dementia policy and practice by Le Couteur and colleagues (1). The apparent under-diagnosis of dementia in general practice is presented as a problem needing urgent solution. In my experience few are interested in why diagnoses rates are low. Contrary to the rule of no intervention without a diagnosis, remedies and targets are proposed and pursued energetically.
I suggest eight reasons why there is a diagnostic gap. Changes in thinking, memory and behaviour are not recognised as significant by the individual experiencing them, or by those around them, who may normalise changes as being part of ageing, due to life events or expressions of the personality. Symptomatic individuals may not accept that anything is wrong and resist further investigation. General practitioners may misattribute changes to ageing, well beyond the point of plausibility. General practitioners may protect symptomatic patients from a stigmatising diagnostic label which could place them on an escalator into disability; in doing so they will protect themselves from the consequences of mislabelling. General practitioners who believe that there are few resources to support their patients with dementia may be slow to diagnose. In some patients diagnosis may appear to make no difference to care, or may perversely worsen it by blocking access to rehabilitation or threatening residency in a care home. Memory clinics may have long waiting lists, which lengthen as demand increases. And finally, a formal diagnosis may be made by a specialist but not get recorded in a way that is captured for the Quality & Outcomes Framework reporting.
Different combinations of these (and other) factors may occur in different contexts, making local understanding important. This is not necessarily how the NHS works. The over-emphasis on diagnosis may divert resources away from much-needed community services, in another turn of the Inverse Care Law. Sceptical GPs will be vindicated if low-level support for patients early in the disease course, or palliative care for those at the end of life, fail to meet their needs whilst memory clinics seek extra funding to deal with their backlogs.
(1) LeCouteur DG, Doust J, Creasey H, Brayne C Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis BMJ 2013;347:f5125
Competing interests: Associate Director of the Dementia & Neurodegenerative Diseases Research network; recipient of grants from the NIHR and European Commission for dementia research; member of the Alzheimer's Society
In their rapid response to this article, Burns et al state that ‘less than half of people with dementia receive a formal diagnosis.’ This oft-quoted claim is a misleading use of questionable prevalence data, and needs to be challenged.
The statistic being referred to is an estimate that 46% of those with dementia in the UK at the present time have received a diagnosis (1). It is based on the extrapolation of 20 year-old data by a Delphi consensus group which met in 2007 (2) and more recent research suggests that the prevalence of dementia is much lower than thought, and hence diagnosis rates are higher than this estimate (3).
However, even if 46% is the correct figure, it is misleading to state that less than half of people receive a diagnosis. Even if it is true that 54% of people with dementia in the UK are as yet undiagnosed, this does not mean that they will never receive a diagnosis, as the statement by Burns et al implies. This misinterpretation of such an important statistic in the debate around dementia diagnosis is unhelpful and needs to be corrected.
1. Alzheimer’s Society Dramatic variation in dementia diagnosis across UK. (2013).at
2. Knapp, M. & Prince, M. Dementia UK the Full Report into Prevalence. Alzheimer’s Society (2007).at
3. Matthews, F. E. et al. Articles A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England : results of the Cognitive Function and Ageing Study I and II. 6736, 4–11 (2013).
Competing interests: I have received income for writing and speaking from Pulse magazine, and income for writing from Prescriber magazine
Le Couteur et al. raise some important issues in their objection to dementia screening, but their analysis partially clouds the distinction between key issues.
One objection raised is that “exposing people to testing will further increase the risk of being labelled with a new disorder” (1). This exposes two separate issues: further testing and reclassification of diagnosis. We must not mistake them to be the same. We can object to screening without being afraid of new diagnostic classification.
Classification of disease is not static. We change boundaries appropriately as knowledge advances and values change. As knowledge of dementia develops, so should diagnostic classification. Diagnosis has multiple purposes. In addition to clinical benefit, research can be conducted to minimise heterogeneity. This is implied as a reason for the DSM-5 category of “mild neurocognitive disorder” (2).
Critics might claim the diagnosis of mild neurocognitive disorder encompasses too many people who have “normal” age related changes. But there is no reason it cannot be normal to develop a condition with a diagnostic label. It is “normal” to have some degree of osteoarthritis in old age. This neither makes it desirable nor disqualifies it from medical treatment.
It might be objected that these labels might frighten patients. “Pre-dementia” does imply progression to dementia, so should not be used in the absence of very compelling evidence. “Mild cognitive impairment”, or “mild neurocognitive disorder” do not necessarily suggest such a progression. It is the role of the clinician to clearly emphasise what a diagnosis means and the limits of our knowledge. As is so often the case, good communication is the key.
We should object to screening due to the lack of evidence and the diversion of resources. But without appropriate diagnostic criteria we are never likely to gather such evidence. How we label diagnoses is an open question for us as a medical community. We should not be afraid of this conceptual question, which is intertwined with, but distinct from clinical and political questions. Conceptual clarity is required if we are to progress.
References:
1. Le Couteur D, Doust J, Creasey H, Brayne C. Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis. BMJ 2013; 347:f5125 doi: 10.11.1136/bmj.f5125.
2. DSM-5: “What's New” fact sheet http://www.dsm5.org/Documents/Mild%20Neurocognitive%20Disorder%20Fact%20...
Competing interests: No competing interests
Prof Le Couteur and colleagues (BMJ 2013, 347, f5125) in their article “Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis” contribute to the BMJ’s “Too Much Medicine” campaign and at the same time attempt to repudiate three decades of dementia research and clinical practice. It completely misses the main aims of the current political approach and is in danger of being an affront to the millions of people with dementia and their families, who are suffering with this devastating illness, and undoing much of the good done over recent years. For the avoidance of doubt, there is no plan to screen for pre-dementia in England. While accepting that the authors make some valid points, we feel that, perhaps inevitably given the constraints of the campaign, their analysis is one-sided, supported by selective referencing and conflates a number of very distinct issues. We write as a group of clinicians, academics and from personal experience of working in day-to-day practice to improve the quality of life for those affected by dementia.
The impact and significance of dementia is unique. It affects an estimated 36m people worldwide, it costs 600 billion US dollars (1), attracts profound stigma which demotivates people to come forward for assessment (2,3) which contributes to less than half of people with dementia receiving a formal diagnosis. Initiatives in dementia must be balanced with calls on funds from other areas but the case for dementia care is overwhelming. Dementia is a central part of multi-morbidity and impinges on other physical illnesses, for example through late presentation or detection of physical disease, delirium risk, poor compliance with medications, and places unique stress on carers. There are three points we would like to make.
First, the majority of us in clinical practice recognise the scenario of, usually, an older person with cognitive problems (often but not always having difficulty with memory) coming forward for advice and reassurance. A sensible and sensitive clinical assessment can reveal remediable causes for this. Where such causes are found but the person is not regarded clinically as having a dementia, it is important to respond to that. Key components include optimal treatment of any concurrent medical illness, reassurance, bespoke lifestyle advice (which can of course be given to anyone) and specific advice about cognitive changes. Most importantly, this response recognises that to approach a GP about cognitive changes often takes enormous courage. Being taken seriously encourages the person to seek help if and when they experience further deterioration.
Second, initiatives such as memory clinics are a helpful way of providing support to colleagues in primary care. Novel services (which should be evaluated) are being developed (4) which result in better outcomes for patients and their carers and which can potentially save money. They also have the effect of emphasising that dementia need not necessarily be a “specialist” condition and one that, where proper support provided to primary care (whose services are already stretched), can be detected and diagnosed in the community. More importantly, diagnosis of the cause of the dementia and initiation of any medication, as well as the management of dementia as part of a long term condition, may be best carried out in primary care where services and support are available. These services must sit alongside others such as neurology clinics as not all dementia is due to Alzheimer’s disease or vascular disease and other causes often need to be excluded. The UK is a world leader in improving the quality of memory services and to suggest they are there simply to provide patients for research is highly misleading. One positive benefit of such clinics is indeed the opportunity to offer people with dementia the opportunity to participate in research, in line with their rights enshrined within the NHS constitution and something many patients and their families wish to do. The drugs we have to treat many of the underlying causes of dementia would not be available without research and development from industry (one unfortunate error in the article needs correcting - the authors state that the cholinesterase inhibitors cost “£800 to £1000 per patient each year in the UK” when in fact donepezil costs the NHS £23 per patient per year, 5). We need to work in partnership towards the common goal of better treatments. Interacting with industry at many levels in different ways is important (6) and the advantages recognised by most people.
Third, the developments in policy and practice are directed towards the estimated 400,000 people in the UK who have dementia but who do not yet have a formal diagnosis and therefore are being denied access to the financial, psychological and practical support that the diagnosis can bring. Support systems should be developed in parallel with strategies to improve diagnosis. To speak of the “curse of diagnosis” is misleading and bordering on an insult to the many people who seek that. Surveys of patients, carers and the general population are consistent in finding that diagnosis is generally what people want (1, 7) and can be helpful (8). We do need to be alert to the potential harms of sharing a diagnosis inappropriately.
There is no suggestion that population screening for dementia will or should be introduced in practice and the initiatives are to identify people who have dementia, as yet undiagnosed, by case finding (often confused with screening particularly in the popular/trade press, such as the BMJ) and this may include people who complain of memory problems. As if to underscore the misunderstanding, the Editor of the BMJ, in her advert for What’s New online, states ”In England, the government has announced that it will reward general practitioners—around £3600 (€4200; $5600) a year per practice—for assessing patients aged over 75 years for dementia and cognitive impairment.” This is not in the current Enhanced Service (9) and we would respectfully suggest that Dr Godlee checks her sources. We agree with the authors that screening is not appropriate but could be something pursued and examined from a research perspective.
Mature and open dialogue with patients, carers and colleagues from all disciplines will serve us all well in achieving the aim of allowing people to live well with dementia by normalising and de-stigmatising dementia, ensuring that they, and their carers have the opportunity to optimise their involvement in planning their care. We need high quality education for everyone involved in dementia care, evidence-based services which respond to the needs of people with dementia and which balance the supply/demand sides, avoiding the inverse care law of giving the most care to the least in need. At the same time, we need to know more about the natural history of dementia and the nature of its main causes. We hope others share a similar view.
References
1. http://www.alz.co.uk/research/world-report-2011
2. http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1056
3. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1583&pageNumber=3
4. http://www.ncbi.nlm.nih.gov/pubmed/19480115
5. http://www.medicinescomplete.com/mc/bnf/current/PHP3239-donepezil-hydrochloride.htm
6. https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil...
7. http://alzres.com/content/5/5/43
8. http://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2007.01600.x/pdf
9. http://www.england.nhs.uk/wp-content/uploads/2013/03/ess-dementia.pdf
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; Sube Banerjee: Has received consultancy fees, speakers’ fees, research funding and educational support to attend conferences from pharmaceutical companies involved in the manufacture of antidepressants and antidementia drugs, and has been employed by the Department of Health for England; Peter Connelly: Has run a case-finding service for dementia for the past two years as part of a Scottish Dementia Demonstrator site development; Derek Hill: Employed by a company working on a project involving dementia diagnosis; Jeremy Hughes: Is the Chair of National Voices and the Co-chair of Dementia Friendly Communities Champions Group (PM Challenge on Dementia); Gill Livingston: Funded by the AS to do an RCT on increasing timely diagnosis; John O’Brien: Has been a consultant for GE Healthcare, Bayer Healthcare, Lilly, Cytox and TauRx and has received honoraria for talks from Pfizer, GE Healthcare, Eisai, Shire, Lundbeck, Lilly and Novartis; Peter Passmore: Received honoraria, clinical trial support and assistance with attendance at meetings from Pfizer, Eisai, Janssen, Shire, Lundbeck; Jill Rasmussen: RCGP Clinical Champion Dementia, Member of the Alzheimer's Disease Society GP Advisory Group, Surrey PCT Clinical Lead Learning Disability, East Surrey CCG Lead for Learning Disability and Dementia, Co-developer of MoodHive (Depression Anxiety Pathway), RCGP Chair Learning Disability Special Interest Group, Consultancy / Advisory Boards / Speakers Bureau: Autism Therapeutics, AstraZeneca, Alzheimer’s Society, Chronos, Lilly, Otsuka, Pfizer, Roche, Servier, Targacept, TauRX. [Amended 28 October 2013 by BMJ Editorial at authors' request]
This provocative and thoughtful article has stimulated a variety of responses. These include the necessary distinction between awareness campaigns and proactive screening for cognitive decline, and the investigation of those who sense or whose relatives notice some progressive change in cognitive ability. The thorough assessment of the latter would still seem an appropriate role for ‘memory services’, however constituted. Increased public awareness has already influenced referral to memory clinics however.
Some objective support for this comes from a retrospective review of patients attending our working age neurology-led memory clinic. The percentage of people with an organic dementia decreased from 65% in 2004 & 2006 to 45% in 2012. Since then we have also reviewed all new clinic referrals clinic over a 10 month period and the pattern was maintained, with only 45% of patients fulfilling criteria for an organic memory problem. A similar change in referral profile has been seen elsewhere in the UK 1. As Le Couteur et al. claim, people with memory complaints can all too easily be diagnosed with a prodrome of dementia such as subjective memory decline. We agree that this type of label is not likely to be useful but argue that patients with non progressive memory complaints are distressed and their symptoms are often chronic. There is some evidence of chronicity from a study of people with Functional Memory Disorder (defined as 1. Acquired memory impairment that significantly affects their professional and/or private life. 2. Neuropsychological tests are within 1.5 standard deviations of age-corrected normative data. 3. Absence of a recognizable organic cause of cognitive impairment or major psychiatric disease. 4. Aged >70) which reported remission in only a handful of cases 2. Depression and anxiety are very common in our clinic and a multidisciplinary approach and staff establishment in the memory clinic would be the ideal way of meeting these patients’ needs.
The other salient change in the memory clinic referral profile is the presentation of many more patients with early stage Alzheimer’s disease. These present the greatest difficulty in accurate diagnosis and management and highlight the need for more accurate and better assessment instruments which should be validated for this population. Desirable changes in primary and secondary care are improved pathways for the assessment and management of these patients with early cognitive decline as well as the patients with ‘benign’ and non-progressive but disabling ‘non-organic’ memory complaints.
1. Menon R, Larner AJ. Use of cognitive screening instruments in primary care: the impact of national dementia directives (NICE/SCIE, National Dementia Strategy). Fam Pract 2011;28(3):272-6.
2. Schmidtke K, Pohlmann S, Metternich B. The syndrome of functional memory disorder: definition, etiology, and natural course. Am J Geriatr Psychiatry 2008;16(12):981-8.
Competing interests: No competing interests
In their articulate critique of the troublesome nosology of cognitive disorders Le Couteur and colleagues make many well-reasoned points about the weakness of a population screening-based approach to diagnosing dementia and 'predementia'. However as other responses have noted there is in the article a tendency to conflate the issues of screening asymptomatic or trivially symptomatic patients for early evidence of Alzheimer's disease etc, with the rather different challenge facing patients with mild symptoms which may nevertheless be a source of great anxiety to them.
It is undeniably the case that a visit to the memory clinic is a stressful experience for many patients as the authors point out, but a balanced consideration has to also reflect on the stress which might arise for some patients from not having the opportunity to have an assessment at the time they would like it. Clinicians working in this area will readily recognise that there are a whole spectrum of emotional responses on the part of patients and families both to a diagnosis of mild cognitive impairment or early dementia, but also to the lack of a diagnosis and persisting uncertainty. Many factors will shape these emotional responses and expectations not least of all personal experience with other family members who may have experienced dementia in the past.
A patient-centred approach must surely suggest a way forward here, and a middle ground between that inhabited by the screening zealots on the one hand and the memory clinic deniers on the other. For these early-stage cognitive problems uncomplicated by the risks associated with established dementia, we must be guided to a greater extent by patient preference and expectations and recognise that a one-size-fits-all approach is not the right one.
Competing interests: I am involved in the diagnosis of dementing illnesses on a daily basis and sometimes prescribe antidementia medications
Please note the COI statement in addition to my comment from the 20th of September
Competing interests: Within the last three years: Consultation fees from Jansen-Cilag and Novartis, speaker fees from Novartis and Esai
Le Couteur et al. (BMJ Sept 9) rightly and comprehensively address the risks and adverse effects of dementia screening and early and presymptomatic diagnoses of mild cognitive impairment (MCI) and early Alzheimer’s Disease without fulfilling dementia criteria. One of the basic problems here is that the borderline between dementia and mild cognitive impairment, when the cognitive decline does or does not interfere with the ability to function at work or at usual activities, is not clearly defined at all for clinical practice.1 This opens the route to a large inter-doctor variability, with a current tendency to diagnose dementia at a very early stage, also linked to the increasing capabilities in information handling needed to be able to function in modern society and average jobs.
Next, Le Couteur et al. warn about the results that such very early diagnoses of dementia may have on identity, potentially leading to feelings of loss, anger, uncertainty, and frustration. Additionally, we showed that the diagnosis of MCI also often has adverse effects.2 In our qualitative study consequences of MCI disclosure were that patients experienced anxiety and loss of self-confidence, feelings of irritation and anger towards others, resulting in abandoning social activities. Therefore, we still have to conclude that early diagnostic disclosure of pre-dementia and early dementia diagnoses is still far from being an evidence based practice.
For personalized medicine at this early stage, we first need to carefully identify what priorities people with memory complaints (or memory deficits recognized by others) have with regard to improvement of their health. This is most problematic for older people. For them, health should best be broadly defined, as most aged people already have other diseases or impairments, and can no longer aim for complete physical, mental and social wellbeing. Huber et al proposed to use health in the meaning of a better capacity to adapt and self manage in the face of social, physical, and emotional challenges, which fits better in the aging perspective. 3
Whether early diagnosis and diagnostic disclosure improves adaptation to minor cognitive decline related to aging or early Alzheimer pathology is highly personal. Due to referral bias, professionals in this field are likely to have opposing experience with these personal preferences. For example, an academic or tertiary memory clinic will see a selection of individuals who are highly motivated to receive an early diagnosis, and have no problem to undergo extensive testing. These will also be the individuals who perceive harm if they are not given an opportunity for early diagnosis. As a result, professionals in these settings may have a very different perception of patients’ personal preferences compared to those working in community settings. The risk is that these professionals extend these expectations to all patients referred to memory clinics, without verifying individual priorities.
Taking these personal priorities into account is a prerequisite for realizing added value in memory clinics, and evidence based diagnostics.4 One of the few short and structured methods specifically focusing on identifying priorities for health improvement in older subjects is the EASYcare approach.5 It consists of guided listening, needs assessment and shared goal setting. When the priority is set by an individual at knowing the cause of the minor but personally relevant cognitive impairment, investigating and disclosing an early diagnosis is appropriate. When this is taken into account, memory clinics may realize added value also in diagnostics at this stage, as some have already evidenced to do.6 The real added value of dementia diagnosis disclosure probably has to come from the first intervention in dementia care: offering information and psychosocial support in dealing with the consequences of dementia. However, such a personalized diagnostic and support process in memory clinics is still far from routine practice, though for many patients an urgent way to go.
1.McKhann GM, Knopman DS, Chertkow H et al. The diagnosis of dementia due to Alzheimer’s disease: recommendations from the national institute on Aging-Alzheimer’s association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s & Dementia 2011;7;263-269.
2.Joosten-Weyn Banningh L, Vernooij-Dassen M, Olde Rikkert MGM, Teunisse JP. Mild cognitive impairment: coping with an uncertain label.
Int J Geriatr Psychiatry. 2008;23:148-54.
3.Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ. 2011;343:d4163.
4.Ferrante di Ruffano L, Hyde CJ, McCaffery KJ, Bossuyt PM, Deeks JJ. Assessing the value of diagnostic tests: a framework for designing and evaluating trials. BMJ. 2012;344:e686
5.OldeRikkert, M G, Long JF, Philp I. Development and evidence base of a new efficient assessment instrument for international use by nurses in community settings with older people. Int J Nurs Stud 2013;50:1180-3
6.Wolfs CA, Dirksen CD, Kessels A, Severens JL, Verhey FR. Economic evaluation of an integrated diagnostic approach for psychogeriatric patients: results of a randomized controlled trial. Arch Gen Psychiatry. 2009;66:313-23
Competing interests: None
Re: Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis
Le Couteur and co-authors’ article, in which they argue that there is no evidence on which to base dementia screening programmes and that the potential “harm” of a dementia diagnosis is being ignored [1], has caused much debate, and been called variously “comprehensive”, “though-provoking”, “perceptive”. Yet few responses noted that much of the research referenced in the article does not provide evidence for their argument, whilst many papers providing contradictory evidence are omitted.
Throughout their article the terms ‘screening’ and ‘early diagnosis’ are conflated, despite the difference between them. In this response, we do not address whether a screening programme (i.e. systematic testing of ostensibly healthy individuals with no complaints) would be effective. Rather, we take issue with the purported harms of early diagnosis presented. Perhaps “Little attention has been paid to the fact that attending memory clinics generates stress for patients and their carers” [1] because neither of the articles cited in support of this claim actually comes to this conclusion. The first does not measure stress [2], the second simply concludes that carers attending a memory clinic for the first time experience stress, with the best predictor of this stress being the impairment in activities of daily living (ADL) of the person with suspected cognitive impairment [3]. Neither attempts to draw a causal link between stress or distress in people, and their attendence at a memory clinic.
Still arguing that there is “no sound evidence that memory clinics are beneficial”, Le Couteur et al. claim that memory clinics may be no more effective than standard care by general practitioners, but the paper they cite only concludes that there is no evidence that memory clinics and GP practices differ with regard to “post-diagnosis treatment and coordination of care” [4]; it does not make any claims about the relative effectiveness of memory clinics and GPs when it comes to diagnosis, and thus seems irrelevant to the authors’ argument that there should be less focus on early diagnosis.
Attempting to construct an argument that early diagnosis is not beneficial in terms of the interventions it allows, the authors cite only one study, showing no benefit for a psychosocial intervention in Alzheimer’s disease [5] but omit to cite the many studies that do show the benefit of varied non-pharmacological interventions for both people with dementia [6,e.g., 7] and their carers [8]. Some of these interventions are only of benefit to those in the early stages of dementia [6] and therefore denying people a diagnosis would also deny them access to a potentially useful intervention.
Furthermore the single study that they do cite does not provide an argument against the assertion that early diagnosis is beneficial in allowing provision of legal, financial and lifestyle advice. The authors’ argument against this point is that all older people should have advice on these matters. It seems self-evident that people with dementia face particular challenges and would benefit from specialist advice from professionals with experience on these matters, especially due to the complex and changing nature of the benefits and services to which they may be entitled.
Yes, some patients may “become anxious after dementia or mild cognitive impairment is diagnosed” (although Le Couteur et al. have no reference to support this claim), but as Bamford et al., [9] say, “it is difficult to distinguish the consequences of diagnostic disclosure from the problems that arise from living with dementia independent of whether the diagnosis was disclosed.” [9, emphasis added]. That systematic review also cites many studies showing positive responses to a dementia diagnosis, including “End to uncertainty”, “Increased understanding of problems”, “Access to support” and “Develop positive coping strategies” which are not alluded to in Le Couteur et al.’s article. In addition, whilst some people who have a dementia diagnosis unfortunately do commit suicide, this is almost always in people who also meet clinical criteria for depression, which is a big risk factor for suicide, particularly in those over 65 [10] and is treatable in dementia [e.g., 11]; indeed compared with a diagnosis of other psychiatric disorders suicide is less likely in the year immediately following a dementia diagnosis suggesting that disclosure in itself does not increase the risk [12].
Patients’ views are clear: they do find aspects of the diagnostic process difficult – Manthorpe et al. quote one participant as saying “It’s just the not knowing if it is something that’s wrong with you, or if it is just forgetfulness.” [2] – but an article reviewing patient views about receiving a dementia diagnosis concluded that “participants . . . felt that disclosure should be made . . . as early as possible in the dementia trajectory.” [13, emphasis added].
Overall, we would argue that the studies cited by Le Couteur et al, do not support their claim that an early diagnosis of dementia is not beneficial, or even harmful. Le Couteur et al. repeatedly claim that early diagnosis ‘may’ cause harm, but such statements are misleading; early diagnosis equally ‘may not’ cause harm, and studies that show a benefit are excluded. The conclusions of the papers they cite do not match the arguments that they make in a large number of cases. Furthermore, we find the authors’ confusion of the terms ‘screening’ and ‘early diagnosis’ troublesome. Whilst there ‘may’ or ‘may not’ be evidence that screening is beneficial (we have not attempted to address this issue), we would suggest that the greatest harm from a screening programme would derive from the false positives it produces (i.e. people who are told they have a neurodegenerative disease when in fact they do not). This does not alter the case for early diagnosis of patients who present complaining of cognitive deficits, where an accurate and specific diagnosis can be given, and there is evidence from a systematic and comprehensive review that such a diagnosis is beneficial [14].
In all our years of working with this population we have heard many justified grievances from patients and families, but are yet to have anyone complain that they were diagnosed too early.
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2 Manthorpe J, Samsi K, Campbell S, et al. From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences. Br J Gen Pract 2013;63:e69–75. doi:10.3399/bjgp13X660805
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Competing interests: SMDH offers psychological interventions to people with a diagnosis of dementia and their families and carers. TS's research includes looking at potential neuropsychometric and imaging biomarkers of dementia, particularly in Posterior Cortical Atrophy.