Open letter to the prime minister and chief medical officer for England

There is no evidence base for proposed dementia screening

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e8588 (Published 27 December 2012)
Cite this as: BMJ 2012;345:e8588

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Alistair Burns, National Clinical Director for Dementia, has arranged a meeting for the 6th June 2013 to discuss the diagnosis of dementia as much debated of late in the BMJ. The title will be welcome to all: “Timely diagnosis of dementia: integrating perspectives, achieving consensus(1)”. I have not been given the opportunity to offer my perspective, but if I had, it would have been to express my confusion. This confusion of mine is about policy that has, since the announcement of this meeting, been rolled out. On the 25th April, the Department of Health (under Minister Norman Lamb) released a policy for England “Improving care for people with dementia(2)”. There is no mention at all of timely diagnosis in this policy which continues to advocate “early” diagnosis.

When I was training as a psychiatrist, 20 years ago now, the consultant I worked for asked me to give a talk on ‘Truth telling and dementia” – the context then(3), I now reflect, was very different to today.

“Truth telling and dementia” is a subject that requires revisiting in light of this recent debate. In recent years it would seem to me that my specialty has lost perspective of the epidemiology and evidence which reveals that cognitive change with age is complicated and not always progressive. At the millennium turn we still talked about “aged-related memory loss” but also had the vital understanding that memory loss in age is not inevitable(4). There has been no scientific evidence in the intervening years to suggest that this approach was wrong; yet now we appear to have reached a stage where all memory loss in age risks being labelled as early dementia or early Alzheimer’s disease. To me, this is not truthful. Nor is it truthful to allow any misunderstanding of the efficacy of available treatments as being anything other than symptomatic.

It is only necessary to look at the list of “declared interests” in any correspondence regarding this issue to identify the close links between the medical profession and the pharmaceutical industry(5). These links are of course essential to further our shared goal of continued innovation in medicines development. I am however concerned that as a profession we risk repeating previous mistakes. Professor Banerjee in his report: “The use of antipsychotic medication for people with dementia(6)” found that of the 180,000 prescriptions for people with dementia overall, 140,000 were inappropriate; this is around two thirds of overall use of the drugs for people with dementia. He also found that antipsychotic drugs have been used inappropriately in all care settings. Reducing the use of antipsychotic drugs for people with dementia is a national priority in England(7). It has been my experience that these medications were heavily marketed for use in people with dementia, often using the technique of using “opinion leaders” within the profession to provide “continuing medical education” to their peers.

To me the truth is in the evidence. It is my earnest hope that the planned meeting of the 6th June 2013 “Timely diagnosis of dementia” will be guided by evidence and truthfully represent the complexity of memory loss in age.

References:

(1) This meeting was drawn to my attention by Dr Iona Heath

(2) Department of Health (England) Improving care for people with dementia 25 Apr 2013 https://www.gov.uk/government/policies/improving-care-for-people-with-de...

(3) G. Pinner & W. P. Bouman What should we tell people about dementia? APT September 2003 9:335-341; doi:10.1192/apt.9.5.335

(4) J. T. O'Brien Age-associated Memory Impairment and Related Disorders APT July 1999 5:279-287; doi:10.1192/apt.5.4.279

(5) http://www.bmj.com/content/345/bmj.e8588/rr/637358

(6) S. Banerjee The use of antipsychotic medication for people with dementia: Time for action A report for the Minister of State for Care Services, 3 Oct 2009

(7) Department of Health (England) Living Well With Dementia: a national dementia strategy, 3 February 200

Competing interests: None declared

Peter J. Gordon, Psychiatrist for Older Adults

NHS, Forth Valley

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7 April 2013

We would like to comment on Burns et al’s response to Brayne et al’s rallying call for an evidence-based approach to dementia and related policy development. Three areas interest us in particular: the “early” versus ”timely” debate; the role of evidence; and how best to avoid harm.

1. TIMELY:
We are delighted to see that Burns et al state that, when approaching the diagnosis of dementia, “most people ‎now agree that “timely” is a better way of describing what is trying to be achieved.” (1) However, at the same time Burns et al draw attention to the 2012 All-Party Parliamentary Group (APPG) report on Unlocking Diagnosis.(2) Baroness Greengross introduces this report as follows: “Evidence heard by the APPG highlights just how important early diagnosis is.” In the body of this report the word ‘early’ appears forty times in total whilst the word ‘timely’ is mentioned four times.

We would suggest that it is now time to abandon the use of the term “early diagnosis” altogether, to limit the confusion already caused by its overuse.

2. EVIDENCE:
Burns et al repeat one stark statistic: “the estimated 400,000 people with dementia who do not have a ‎diagnosis.” However this statistic is extrapolated from data which is now nearly 20 years old.(3) It is the research currently being undertaken by Brayne and others which should guide our practice. To “put the policy cart before the research horse” risks repeating the mistakes of the past in so many areas where an intervention which intuitively seems to be a “good idea” is later proven to cause significant harm. This is why evidence-based medicine must be the foundation of good practice.

3. HARM:
Burns et al reassure us that “by putting clinicians in the driving seat of any clinical ‎assessment will protect individuals against any inappropriate intervention1.” We have limited faith in this approach for two main reasons. The first is that, however well-intended, clinicians are subject to a wide range of influences, whether these be personal, external guidance from politicians and charities, or what is traditionally considered “conflict of interest” . The debate regarding “early” versus “timely” is a case in point, where until very recently only the potential “benefits of early diagnosis” were aired. The second is that this particular issue has such profound implications for such a large proportion of the community that it cannot be left to “doctor knows best”. This debate really needs to have a multidisciplinary approach including public health, sociologists, the medical humanities, philosophers (4) and a complete representation of society, not just those with dementia, their carers and doctors.

References:

(1) Burns et al. Re: A rallying call for an evidence based approach to dementia ‎and related policy development. 21 March 2013 http://www.bmj.com/content/345/bmj.e8588/rr/637358

(2) Unlocking Diagnosis, All-Party Parliamentary Group report. July 2012. House of Commons http://alzheimers.org.uk/site/scripts/download_info.php?fileID=1457

(3) Knapp, Martin, et al. Dementia UK: A report into the prevalence and cost of dementia prepared by the Personal Social Services Research Unity (PSSRU) at the London School of Economics and the Institute of Psychiatry at King's College London, for the Alzheimer's Society. London : Alzheimer's Society, 2007.

(4) Hughes, J. Philosophical issues in dementia. Current Opinion in Psychiatry: May 2013 - Volume 26 - Issue 3 - p 283–288

Competing interests: None declared

Peter J. Gordon, Psychiatrist for older adults

Sian F. Gordon, General Practitioner

NHS, Forth Valley

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Carol Brayne and colleagues make a number of points about dementia policy and the current ‎initiatives being consulted upon. ‎

The issue of the terminology of early or timely diagnosis of dementia is important. Most people ‎now agree that “timely” is a better way of describing what is trying to be achieved – it suggests a ‎person centred approach, does not tie the diagnosis to any particular disease stage and ‎encompasses the fact that the person (and/or their families and carers) will gain benefit from the ‎process. Family carers cite lack of diagnosis as the greatest unmet need. The need for people ‎to be able to ask about memory concerns is enshrined in the All Party Parliamentary Group’s ‎recent report on Unlocking Diagnosis (http://www.alzheimers.org.uk/appg). We would extend ‎this to say specifically that there needs to be support after diagnosis, an aspiration captured in ‎the NHS Mandate (http://mandate.dh.gov.uk) which sets out the objectives for the NHS. ‎

The view that there is no “high quality evidence” to support “early” diagnosis may be true but it ‎is a shame if hundreds of thousands of people are denied access to the treatment and support ‎from which they could benefit (such as autonomy and empowerment and a catalyst for ‎discussions about Power of Attorney, maintaining health, driving, Advanced Care Planning and ‎access to Telecare) because they are waiting for researchers and academics to develop ‎evidence which passes the sometimes arbitrary hurdle of high quality. The lived experience of ‎people with dementia and their families and carers which has guided policy articulates clearly the ‎anecdotal but actual and often substantial harms done by not knowing what was going on. ‎However, the lack of evidence does reflect the decision not to support population screening for ‎dementia, something which is plainly, according to any definition of population screening, not ‎being advocated. It is misleading to suggest that what is being consulted upon is tantamount ‎to a diagnosis being “forced” on people and absolute respect must be given to anyone not ‎wishing to know. We must be aware of the dangers of being overtaken by events and the ‎availability of online tests, the success of awareness campaigns and the interest in dementia ‎means that the public are much more informed and willing to talk about dementia and symptoms ‎of memory loss. ‎

We accept that the issue of potential harm is crucial, would contend that a definitive view on this ‎should be subject to an evidence base, and by putting clinicians in the driving seat of any clinical ‎assessment will protect individuals against any inappropriate intervention. Of course balanced ‎with this, is the harm done to the estimated 400,000 people with dementia who do not have a ‎diagnosis and who could benefit from the treatment and support which is available. ‎
‎ ‎

We value the opportunity to discuss issues around diagnosis and will be suggesting, to avoid a ‎piecemeal approach to the debate, that we hold a consensus conference sometime in the next ‎few weeks to air a variety of views with the ambition that we come to a conclusion which ‎embraces the most important aspect – what constitutes the best outcome for patients, their ‎families and carers. ‎

The important thing for us all is that we are having a lively debate on dementia which has been ‎forgotten for so long. Brayne and colleagues urge that the policy cart should not be put before ‎the research horse – let’s align them. ‎

Competing interests: Alistair Burns: Advisor on dementia to the Department of Health in 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 or 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. Gill Livingston: Funded by the AS to do an RCT on increasing timely diagnosis.‎ ‎ ‎ 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.‎ ‎ ‎ Simon Wright: Received honoraria and fees from the 4 pharmaceutical companies who have sold the drugs ‎for ‎dementia.‎

Alistair Burns, Professor of Old Age Psychiatry, University of Manchester; Clinical Director of Manchester ‎Academic Health Science Centre (MAHSC); National Clinical Director for Dementia in ‎England

Dr Charles Alessi, Chairman National Association of Primary Care; Professor Sube Banerjee, Professor of Dementia; Dr Peter Brindle, Director of South West DeNDRoN; Dr Nick Cartmell, GP Lead for Dementia NHS South of England;‎ Dr Peter Connelly, former Chair, Faculty of Old Age Psychiatry, Royal College of Psychiatrists; Dr Michael Dixon, Chair of NHS Alliance; Sabrina Fuller, Consultant in Public Health, NHS Greater Manchester; Dr David Geddes, Head of Primary Care Commissioning, NHS Commissioning Board; Dr Ian Greaves, Gnossal Surgery; Professor Derek Hill, UCL; Jeremy Hughes, Chief Executive, Alzheimer's Society; Professor David Jolley, West Midlands; Professor Gill Livingston, Professor of Psychiatry of Older People; Dr Martin McShane, NHS Commissioning Board; Dr Gary Morrison, Consultant & Clinical Lead Dementia; Professor Peter Passmore, Professor of Ageing and Geriatric Medicine; Dr Jill Rasmussen, Clinical Commissioning Lead for mental health, learning disability and dementia for East Surrey CCG; co-developer of MoodHive (Depression Anxiety Pathway); Chair of the Learning Disability Special Interest Group and Clinical Champion for Dementia at the Royal College of General Practitioners; Member of the Wellcome Trust Technology Transfer Challenge Committee, Director of psi-napse, an independent consultancy that advises pharmaceutical companies, and venture capital banks and organisations about new therapeutics for psychiatric and neurological disorders;‎ Professor Martin Rossor, Department of Clinical Neurology, UCL; Dr Karim Saad, Regional Clinical Lead for Dementia NHS West Midlands; Professor George Tadros, Consultant in Old Age Liaison Psychiatry; Dr James Warner, Chair, Faculty of Old Age Psychiatry, Royal College of Psychiatrists; Professor Bob Woods, DSDC Wales, Bangor University; Dr Simon Wright, Consultant Psychiatrist for Older People, Rotherham General Hospital

University of Manchester, Faculty of Medical and Human Sciences, Institute of Brain, Behaviour and Mental Health, The University of Manchester, Core Technology Facility, ‎46 Grafton Street, Manchester M13 9NT

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We are writing in response to the Department of Health’s consultation on ‘early’ or ‘timely’ diagnosis of dementia in primary care and the debate this and other policy initiatives have exposed in England. Similar policy change has been promoted in the United States (US) with the introduction of a Medicare Annual Wellness Visit (2011) which includes an annual cognitive screen.

Our first point is around the use of the term ‘early’ diagnosis, which appears to have entered public discourse without discussion of what it actually means. The prevailing view from many patients, their representatives and professionals is that a diagnosis should be made as soon as possible in every individual case. This is understandably driven by personal and professional experiences of delays in access to diagnosis and appropriate support. But timely diagnosis for that person in their particular setting is undeniably current good clinical practice, if not universally available. This ‘timely’ diagnosis is not necessarily the same as ‘early’. There is currently no high quality evidence that diagnosis before the usual point of clinical presentation leads to long term improvements for people with dementia and their families. Early diagnosis is driven by the ambition to ‘close’ the gap between those people estimated to have dementia without a diagnosis and those in contact with services who have a diagnosis. This has implicit acceptance that all these people would benefit from earliest possible diagnosis. The Nuffield Bioethics Report from 2009 provides a useful moral argument in this area; the report stated that there is a ‘distinction between early and timely diagnosis’ and that if a person’s wellbeing is not enhanced by receiving a diagnosis, it should not be forced upon them.

Whether the policies being consulted on and currently implemented constitute an introduction of screening or aggressive opportunistic case finding in order to meet targets is important. The loose use of terms such as ‘early’ and ‘screening’, alongside policies that advocate widespread use of dementia orientated tests in people presenting with other conditions, seems perilously close to slipping into population screening. Hitherto, the UK has prided itself internationally on its rational screening policy, rigorously applied to other major chronic diseases. The UK approach has been that screening is not introduced until the weight of evidence on effectiveness, cost benefit, social and health service training implications and system and societal readiness is fully worked through, including screening and diagnostic methods and therapeutic evidence. Why therefore have we not done this with dementia?

Of particular concern is the lack of acknowledgement in current policy development and implementation of potential harms of premature diagnosis. The usual argument in favour of very early diagnosis is the apparently self-evident question ‘Why would you not do this?’ However, there are potential adverse effects, many of which have been articulated by others (and are familiar to those who work in screening). They include: diversion of resources from activities of proven value; misclassification of substantial numbers of people through application of screening tests which cannot have 100% sensitivity and 100% specificity; introduction of testing in unprepared settings to people - who do not fully understand what screening means, have had no chance to consider the benefits or harms of being tested, which must include possibility of overdiagnosis and overtreatment (viz. the breast cancer screening discussions), and have not therefore had the opportunity to give informed consent; raising expectations of support and services that cannot be provided and may be of limited benefit; and raising further the levels of anxiety in the population, particularly among older people.

This not to say that screening for dementia in one or more guises should not be introduced at some point in the future. Our concern is that we do not know and will not know what is appropriate and better than current practice unless these changes are made within an evaluative and research based approach. To address the current gaps in knowledge requires rigorous research of different types: formal trials, experimental roll out with evaluation, implementation research and qualitative research, all of which play unique and complementary roles and which must be integrated to create a sound evidence base.

The current piecemeal implementation of dementia policies will not provide this foundation. The concerns we have expressed here include clinicians’ reports from their experiences. We support entirely improved support for GPs to recognise dementia and to be aware of those groups at higher risk (including learning disability, stroke and Parkinson’s disease), with appropriate support for referral. However any move towards systematic screening of these groups should also be underpinned by evidence that it helps more than harms. Existing evidence and ongoing research should be fully considered in policy development. The Cochrane Collaboration has a review group focused on dementia. The Diagnostic Test Accuracy and ALOIS programmes of the Cochrane Dementia and Cognitive Improvement Group (Oxford) are systematically exploring the existing research base for early tests and how robust they are in clinical and population settings. The Alzheimer’s Society and BUPA are supporting the existing evidence base for population screening for dementia as well as the creation of a dementia research evidence map. This is complemented by the current work of the James Lind Alliance with the Alzheimer’s Society seeking what the public and professionals think are the priorities for research into dementia and the gaps. We in the UK are not alone over debating these issues: the National Institute on Aging in the US has recently funded a new randomised controlled dementia screening study in primary care (due to report 2016) and the US Preventive Services Task Force is updating its 2003 recommendation regarding dementia screening.

As a group of clinical and applied researchers we urge governments, charities, the academic community and others to be more coordinated in order to put the policy cart after the research horse. Dementia screening should neither be recommended nor routinely implemented unless and until there is robust evidence to support it. The UK can play a unique role in providing the evidence base to inform the ageing world in this area, whilst making a positive difference to the lives of individuals and their families in the future.

Yours,

Carol Brayne, Professor Public Health Medicine, University of Cambridge

Anthony Bayer, Professor Geriatric Medicine, University of Cardiff

Malaz Boustani, Associate Professor of Medicine, Indiana University

Linda Clare, Professor of Clinical Psychology and Neuropsychology, Bangor University

Sarah Cullum, Consultant Old Age Psychiatrist & Honorary Senior Lecturer, University of Bristol

Tom Dening, Professor Dementia Research, University of Nottingham

Leon Flicker, Professor Geriatric Medicine, University of Western Australia

Chris Fox, Senior Clinical Lecturer Old Age Psychiatry, University of East Anglia

Claire Goodman, Professor Health Care Research, University of Hertfordshire

Cornelius Katona, Honorary Professor Mental Health Sciences, University College London

Louise Lafortune, Senior Research Associate, University of Cambridge

Jill Manthorpe, Professor Social Work, Kings College, University of London

Angelique Mavrodavis, Academic Clinical Fellow in Public Health Medicine, University of Warwick

Rupert McShane, Consultant Old Age Psychiatry, Cochrane Dementia and Cognitive Improvement Group, University of Oxford

Greta Rait, Clinical Senior Lecturer Primary Care and Population Health, University College London

Marcus Richards, Professor Psychology in Epidemiology, University College London

Louise Robinson, Professor Primary Care and Ageing, Newcastle University

References:
Dementia: ethical issues. Nuffield Council on Bioethics (2009). http://www.nuffieldbioethics.org/sites/default/files/Nuffield%20Dementia...

Screening for dementia. U.S. Preventive Services task Force (2003). http://www.uspreventiveservicestaskforce.org/uspstf/uspsdeme.htm

Competing interests: None declared

Carol Brayne, Professor of Public Health Medicine

Anthony Bayer, Malaz Boustani, Linda Clare, Sarah Cullum, Tom Dening, Leon Flicker, Chris Fox, Claire Goodman, Cornelius Katona, Louise Lafortune, Jill Manthorpe, Angelique, Mavrodavis, Rupert McShane, Greta Rait, Marcus Richards, Louise Robinson

University of Cambridge, Department of Public Health and Primary Care, University Forvie Site, Robinson Way, Cambridge, CB20SR

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We are relieved that Koekkoek and colleagues (1) share our fears about the plan to screen in primary care all patients over the age of 75 for dementia.

We would like to respond to Koekkoek and colleagues’ additional comments, of which the second was particularly interesting.

Firstly, whether this case finding programme is screening or not, we would still maintain that the benefits have yet to be proven and the possibility of harm seems not even to have been considered.

Secondly, Koekkoek et al. suggest that diagnosing dementia as early as possible might assist management of co-existing conditions such as type 2 diabetes mellitus. They cite an observational (cross-sectional) study demonstrating an association between high levels of social support and glycaemic control in people with type 2 diabetes mellitus and cognitive impairment (defined by HRS-cog scores in the lowest quartile) (2). Unfortunately, there is no evidence of benefit of any intervention in this group of people with diabetes or of any of the other groups for whom case finding for dementia is proposed. If any individual has social or care needs, these should be met on the basis of need, not diagnosis.

Koekkoek et al. fail to disprove our contention that the benefits of early diagnosis of dementia do not outweigh the harms. Not only has the benefit they postulate not been established but, crucially, the risk of harm has not been assessed (3).

We would absolutely agree that “we should take cognitive functioning into account in patients with complex diseases, such as diabetes, and adjust treatment and monitoring to the preserved capacity of individual patients to assure safe self-management and prevent adverse events, especially in elderly with long-standing or more complicated disease.” The medical management of any patient must be tailored to them in every way, not just their cognitive functioning.

We also agree that there should be neither taboo nor stigma associated with diagnosing dementia. One of the most effective antidotes to stigma is effective treatment. Identifying and providing interventions known to have clinically significant benefits should therefore be prioritised (4).

We infer from Koekkoek at al.’s last sentence that they agree with us that there is indeed a significant risk of harm (“doom and gloom”) associated with a case finding programme for dementia, which is not evidence-based.

1 Koekkoek PS, Janssen J, Kappelle LJ, et al. Early detection of dementia: not only doom and gloom. BMJ Rapid Responses. 2013. http://www.bmj.com/content/345/bmj.e8588/rr/629558 (accessed 11 Feb2013).

2 Okura T, Heisler M, Langa KM. Association between cognitive function and social support with glycemic control in adults with diabetes mellitus. Journal of the American Geriatrics Society 2009;57:1816–24.

3 Brunet MD, McCartney M, Heath I, et al. There is no evidence base for proposed dementia screening. BMJ 2012;345:e8588–e8588.

4 Brunet MD, McCartney M, Heath I, et al. Re: Open Letter to The Prime Minister and the Chief Medical Officer Regarding Proposals to Introduce Screening for Dementia. British Medical Journal (Rapid Response). 2012. http://www.bmj.com/content/344/bmj.e2347/rr/621214 (accessed 7 Jan2013).

Competing interests: None declared

Martin D Brunet, general practitioner

Margaret McCartney, general practitioner, Fulton St Medical Practice, Glasgow, Iona Heath, retired general practitioner and former president, Royal College of General Practitioners , Jonathan Tomlinson, general practitioner, Lawson Practice, Hackney, London, Peter Gordon, consultant psychiatrist for older adults, NHS Forth Valley, John Cosgrove, general practitioner, High St Surgery, Birmingham, Peter Deveson, general practitioner, Derby Medical Centre, Epsom, Sian Gordon, general practitioner, Graeme Medical Centre, Falkirk, Sally-Ann Marciano, registered general nurse and dementia campaigner, Deborah Colvin, general practitioner and local medical committee chair, Lawson Practice, Hackney, London, Melissa Sayer, general practitioner, Statham Grove Surgery, Stoke Newington, London, Ruth Silverman, general practitioner, Statham Grove Surgery, Stoke Newington, London, Naureen Bhattia, general practitioner, Limehouse Surgery, London

Binscombe Medical Centre, 106 Binscombe, Godalming, GU7 3PR

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With great interest we read the letter by Brunet et al. in which the authors state that there is no evidence for the dementia screening proposed by the health secretary[1]. Overall, we agree with the authors that screening of all patients above 75 years of age may not be desirable. There are however some additional comments to be made.

Firstly, there is a difference between screening for an asymptomatic disease and early detection of problems that people are already suffering from but that have not been identified as a medical condition yet. The former is the case in many cancer-screenings, which aim to identify the disease before symptoms are present in order to try to improve survival, for example the breast cancer screening. In dementia, the situation is quite different, as, by definition, dementia can only be diagnosed if there are notable cognitive complaints (by the patient or relatives) and objective cognitive dysfunction severe enough to influence daily functioning[2]. Hence, screening for dementia is not looking for asymptomatic patients, but concerns early recognition of significant problems that people are already suffering from, but have not yet been classified as a medical problem. Early signs of dementia are often overlooked or even discarded, despite the impact on affected individuals. There is an average delay of 18 months between the first presentation of symptoms to the general practitioner and a diagnosis of dementia[3]. This indicates that the timely diagnosis mentioned by Brunet et al.[1] in which the patient marks the right time for diagnosis is not always recognized or acknowledged by the doctor.

Secondly, it is believed that the benefits of early diagnosis of dementia do not outweigh potential harms, because early detection cannot alter the course of the disease. In some groups of patients however, an early diagnosis of dementia might actually prevent further medical problems. An example are patients with type 2 diabetes, as stated by the Health Secretary[4]. Type 2 diabetes is associated with modest cognitive decrements5 but also with an increased risk of marked cognitive deficits and dementia[6]. Patients with type 2 diabetes themselves play the central role in the, often complex, management of their own disease. Cognitive impairment can have a serious impact on this self-management. Patients with type 2 diabetes and a lower MMSE-score were found to be less involved in diabetes self-care and diabetes monitoring[7] and are more likely to experience severe hypoglycemic episodes[8;9], and an increased number of hospital admissions[10]. The ACCORD-MIND study found that poor cognitive performance increased the risk of severe hypoglycemia, regardless of the glycemic targets[11]. On the other hand, a higher level of social support for patients with cognitive impairments has been shown to ameliorate their glycemic control[9], possibly preventing these complications. These studies indicate that we should take cognitive functioning into account in patients with complex diseases, such as diabetes, and adjust treatment and monitoring to the preserved capacity of individual patients to assure safe self-management and prevent adverse events, especially in elderly with long-standing or more complicated disease.

To enable early recognition of dementia in at risk patient groups and to create the possibility to include cognitive functioning in the treatment plan, a valid and feasible stepped diagnostic procedure must be available, with a reliable but quick cognitive test as a first step. This stepped approach is recommended by the Health Secretary and we fully agree with it. The most commonly used cognitive test is the Mini-Mental State Examination (MMSE), but this test may not be reliable to detect cognitive problems in the primary care setting[12] and may not be feasible to perform in a large group of at-risk patients due to the time a healthcare professional needs to invest to take the MMSE. The past few years a lot of new cognitive screenings tests, that can be easily administered, have become available, but their performance in the general practice population has not yet been proven[13]. The validity of such instruments needs to be established in the primary care setting. Then, the next step would be to combine timely detection with an evidence-based treatment program and to assess whether this combination is better than watchful waiting.

However, first the taboo on diagnosing dementia must be lifted and possibilities must be created to perform the necessary investigations. Patients with dementia and their caregivers are probably less reluctant than doctors to accept and to deal with a diagnosis of dementia[14]. The diagnosis, although confronting, is also often a relief because it provides an explanation for the problems people experience in daily life; it is never a diagnosis that comes out of the blue[14]. This should persuade doctors and researchers to establish a diagnosis of early dementia.

Looking after our patients with type 2 diabetes and other complex medical conditions, good clinical practice requires to be alert for cognitive impairments. Even the suspicion of cognitive impairment in patients with longstanding diabetes might keep the physician from prescribing insulin to achieve strict HbA1c goals. Stringent control in this group has not proven to reduce vascular complications and does increase treatment complications like hypoglycemic episodes with the risk of hip fractures due to falling15. The example of diabetes lights that screening for dementia in vulnerable groups by the use of a stepped diagnostic procedure, as proposed by the Health Secretary, is not only doom and gloom, although we have a long way to go before we can do it evidence-based.

References

(1)Brunet MD, McCartney M, Heath I, Tomlinson J, Gordon P, Cosgrove J et al. There is no evidence base for proposed dementia screening. BMJ 2012; 345:e8588.

(2)McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology 1984; 34(7):939-944.

(3) Bamford C, Eccles M, Steen N, Robinson L. Can primary care record review facilitate earlier diagnosis of dementia? Fam Pract 2007; 24(2):108-116.

(4)Department of Health. General medical services - contractual changes 2013-2014. 6 Dec 2012. https://www.wp.dh.gov.uk/publications/files/2012/12/GMS-Contract-letter.pdf

(5)Awad N, Gagnon M, Messier C. The relationship between impaired glucose tolerance, type 2 diabetes, and cognitive function. J Clin Exp Neuropsychol 2004; 26(8):1044-1080.

(6)Biessels GJ, Staekenborg S, Brunner E, Brayne C, Scheltens P. Risk of dementia in diabetes mellitus: a systematic review. Lancet Neurol 2006; 5(1):64-74.

(7)Sinclair AJ, Girling AJ, Bayer AJ. Cognitive dysfunction in older subjects with diabetes mellitus: impact on diabetes self-management and use of care services. All Wales Research into Elderly (AWARE) Study. Diabetes Res Clin Pract 2000; 50(3):203-212.

(8)de Galan BE, Zoungas S, Chalmers J, Anderson C, Dufouil C, Pillai A et al. Cognitive function and risks of cardiovascular disease and hypoglycaemia in patients with type 2 diabetes: the Action in Diabetes and Vascular Disease: Preterax and Diamicron Modified Release Controlled Evaluation (ADVANCE) trial. Diabetologia 2009; 52(11):2328-2336.

(9)Okura T, Heisler M, Langa KM. Association between cognitive function and social support with glycemic control in adults with diabetes mellitus. J Am Geriatr Soc 2009; 57(10):1816-1824.

(10)Okie S. Confronting Alzheimer's disease. N Engl J Med 2011; 365(12):1069-1072.

(11)Punthakee Z, Miller ME, Launer LJ, Williamson JD, Lazar RM, Cukierman-Yaffee T et al. Poor Cognitive Function and Risk of Severe Hypoglycemia in Type 2 Diabetes: Post hoc epidemiologic analysis of the ACCORD trial. Diabetes Care 2012; 35(4):787-793.

(12) Mitchell AJ. A meta-analysis of the accuracy of the mini-mental state examination in the detection of dementia and mild cognitive impairment. J Psychiatr Res 2009; 43(4):411-431.

(13) Ismail Z, Rajji TK, Shulman KI. Brief cognitive screening instruments: an update. Int J Geriatr Psychiatry 2010; 25(2):111-120.

(14)Bamford C, Lamont S, Eccles M, Robinson L, May C, Bond J. Disclosing a diagnosis of dementia: a systematic review. Int J Geriatr Psychiatry 2004; 19(2):151-169.

(15)Nelson JM, Dufraux K, Cook PF. The relationship between glycemic control and falls in older adults. J Am Geriatr Soc 2007; 55(12):2041-2044.

Competing interests: None declared

Paula S. Koekkoek, MD

Jolien Janssen, L. Jaap Kappelle, Geert Jan Biessels, Guy E.H.M. Rutten

Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands, P.O. Box 85500; 3508 GA Utrecht, The Netherlands

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I congratulate the authors for writing an open letter on this crucial topic and generating a healthy debate.

I presume none of us can deny from the elephantine burden of dementia in the population as we age. This will only continue to grow given the increasing life expectancy.

In projected figures,By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 6.7 million
— a 30 percent increase from the 5.2 million aged 65 and older currently affected[1]. These figures can only begin to hint at the behavioural,affective issues and impaired quality of life faced on an individual level by a patient and immense care-giver's burden and exhaustion on the part of the primary care giver.

I agree with the authors that currently there is no evidence base for "screening" of dementia . Also, internationally screening is usually done when "treatment of diseases at their earlier stages should be more effective than treatment begun after the development of symptoms" for which we lack evidence when it comes to Dementia. However I still think that early detection for dementia will help us employ non-pharmacological measures as well as let the patient make important life decisions while the capacity remains and cherish memories. I agree with the authors on this note that here is no supporting data on pharmacological therapy for prevention, althought donepezil has some controversial efficacy in Mild Cognitive Impairment and first 12-month progression into Alzhiemer's. [2]

With the introduction of Mild Cognitive Impairment [nonamnestic type] in diagnostic manuals,[3] hopefully this issue will be curtailed at an earlier point with 6 monthly visits for review/re-assesment but MCI itself needs more stringent criteria and diagnostic tool.

Many a times family members unconsiously tend to focus on affective and behavioural symptoms and not report memory problems unless probed into.The primary Issue hindering screening should not be internal fear of being labelled as Dementia on the part of patient. For this alone should not dictate our values/practices/forsightedness. It is also noteworthy to mention that the proposal of proactively asking for memory issues +/- screening tests is not for general population but age specific only [>75y].

To me, there is no harm in pro-actively asking for memory problems [if any] from all patients more than 75 years coming to a GP clinic and if needed, conducting a MMSE. What needs elaboration and debate is the extensivity and intensivity of screening tool /tests employed , need for revised guidelines and the prioritization in NHS fund allocation because without doubt, provision as without doubt, already diagnosed cases should top the list for fund allocation.

Also I believe that [especially in reference to dementia], research should not only narrow down to focusing on finding out objective evidence of slow progression of disease parameters if detected early but also on overall quality of life, satisfaction level, ease of acceptance of diagnosis and necessary delegation of responsibilities while insight/memory is relatively intact.

REF:
[1] Alzheimer’s Association, 2012 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 8, Issue 2http://www.alz.org/downloads/facts_figures_2012.pdf

[2]Deborah Blacker, editorial: Mild Cognitive Impairment — No Benefit from Vitamin E, Little from Donepezil. N Engl J Med 2005; 352:2439-2441http://www.nejm.org/doi/full/10.1056/NEJMe058086

[3]Petersen RC. Mild cognitive impairment. N Engl J Med 2011;364:2227-2234

Competing interests: None declared

Yusra Hanif Khan, Psychiatry Resident

AgaKhan Hospital, Karachi, Pakistan

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The views of authors of the open letter is simply a reflection of their lack of understanding of the importance of early diagnosis of dementia that leads to a perpetuation of existing myths about the disorder in general practice and wider population and a lack of knowledge about the growing evidence of preventative strategies in dementia.

Emerging research evidence on biomarkers indicates that the actual pathology of dementia starts 25 years before clinical symptoms become evident(1), attenuation of risk factors in mid and late life (2,3,4) hold promise in reducing incident dementia and though currently there are no definitive drug treatments to stop the progression of dementia,early diagnosis has significant benefit on patients and carers and local health and social care and hence primary,secondary and tertiary prevention of dementia has taken a centre stage of government policy and the recently published guidance for commissioning public mental health services (5).
The UK goverment is to be congratulated for the stance taken to improve dementia care in this country after years of neglect and views expressed in the open letter should be roundly condemed.

Reference

1.McKhann GM,Knopmanc GS,Chertkowd H et al(2011) The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging and
the Alzheimer’s Association workgroup, Alzheimer’s & Dementia,May 7, 3, 263-269

2.Campion J, Bhui K, Bhugra D (2012)European Psychiatric Associaion(EPA) guidance on prevention of mental disorders.
European Psychiatry, 27, 68 -80

3. Ritchie K, Ritchie CW, Berr C et al(2010)Designing prevetion programmes to reduce incidence of dmentia: propsective cohort study of modifiable risk factors, BMJ 2010;34:c3885

4.Middleton LE and Yaffe K (2009)Promising strategiesfor the prevention of dementia.
Arch Neurol,66(10: 1210-1215

5.Joint Commissioning Panel for Mental health: Guidance for commissioning public mental health services, December 2012, www.jcpmh.info

Competing interests: None declared

Sudip Sikdar, Consultant Psychiatrist in older peples' mental health service

Mersey Care NHS Trust, Waterloo Day Hospital, Park Road, Waterloo, Liverpool, L22 3XR

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There is growing evidence that dementia is going to become a great burden to the healthcare system in the UK, due to the threat of an ageing population.

This, understandably, has led to an urgency to form policies and recommendations to increase diagnosis rates. Though, the question to be posed is, are the views of healthcare professionals being taken into account?

GPs currently understand that there are benefits of an early diagnosis, just as those mentioned here by M D Brunet, though actual clinical practice shows most patients are diagnosed at a progressed stage. Difficulties faced by GPs vary from time constraints, lack of confidence, inability to deal with the consequences of convening a diagnosis, preventing harm to their patient and incomplete knowledge of referral and social services.

It is important to realize that each case is unique and varies in levels of sensitivity. By placing each patient under the same 'veil' of screening, undermines their autonomy and places extra pressure on GPs to convey diagnoses when they already lack confidence in this area.

I am currently undertaking some research into looking at how healthcare professionals construct a diagnosis of dementia in the form of narrative interviews to look further into each case independently.

So, instead of focusing on increasing diagnosis rates across the UK, perhaps the focus should be diverted to the difficulties faced by GPs and other healthcare professionals and resolving those? Not only would this prevent large costs to the health system but also increase the efficiency in diagnosis with respect to each case individually.

1) Alzheimer’s Society. 2012. Dementia 2012 A national challenge. [Online] Available at: [Accessed 20th January 2013]

2) Hinton, L. et al. 2007. Practice Constraints, Behavioural Problems, and Dementia Care: Primary Care Physicians’ Perspectives. Journal of General Internal Medicine. 22(11): p1487-92.

Competing interests: None declared

Saadia A Dhedhi, Medical Student

Barts and The London, Turner Street, Whitechapel, London, E1 2AD

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The impact of dementia on health and social service resources is enormous. The authors in this article refer to the WHO document that states no treatments are available to cure or alter the course of dementia. There is a hope that someday we will have innovative breakthrough in the treatment of dementia.

Whilst we wait, what needs to happen undoubtedly is to develop integrated services to support families and carers.

The Welsh government has made a commitment by employing dementia clinical coordinators to support people diagnosed with dementia. The introduction of Dementia service co-ordinators in our health board has enabled families to have single point of access to navigate and access appropriate services. They ensure that they remain a source of support to help people with an array of difficulties - financial, housing, care needs, spiritual, healthcare. At the grass root level, I guess this makes the most important difference for patients and their families.

We completely agree with the authors' conclusion that much needed funds need not be diverted.

Competing interests: None declared

Priyadarshini Rangappagowda, ST5, PsychiatrY

Dr Swarna Bhat

POW, Bridgend, Princess of wales hospital, Bridgend, CF31 1RQ

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