Cameron launches challenge to end “national crisis” of poor dementia care
BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e2347 (Published 27 March 2012) Cite this as: BMJ 2012;344:e2347All rapid responses
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Dr Brunet and colleagues raise a number of issues about "screening" for dementia. We would like to make four points in response.
First, on average 42% of people with dementia have a diagnosis in the UK - in other words there are around 400,000 people who have the disorder who may be being denied the opportunity to have a diagnosis with the support and potential treatment that can follow. We know that a diagnosis reduces symptoms of anxiety and depression in patients and their carers. To suggest it causes solely harm risks fuelling the fire of stigma.
Second, the proposals are not for screening but legitimate clinical case finding in groups of people known to be at risk of dementia, such as those affected by Coronary Heart Disease, Stroke or Parkinson’s. We agree that screening for Alzheimer's disease (where a diagnostic test is carried out on a population) is not appropriate and as such the proposals are not "directly contrary to" the UK National Screening Committee advice. We agree that any consideration of screening for dementia should be assessed in the same way as for other disorders, recognising that screening for dementia is different from screening for Alzheimer's disease. People would be asked about their memory and, if clinically indicated and appropriate, further assessment could be offered.
Third, recognition of patients with significant cognitive impairment allows a diagnosis of the underlying disease(s). Whilst Alzheimer's disease is the commonest cause of cognitive impairment in the elderly there are many other causes and comorbidities, such as depression, anxiety, side effects of medication and systemic illness, which can be treated.
Fourth, the proposals are for consultation and we agree "the healthcare community needs to work together" to develop the best way of raising awareness of dementia and improving diagnostic rates in both health and social care. Colleagues in primary care are in a unique position and know their patients best - using innovative ways of linking primary, secondary and social care can enhance identification of people who have dementia and can lead to better outcomes.
Competing interests: No competing interests
Alistair Burns nails the problem with the line, "In any other branch of medicine a diagnosis rate of 42% would be scandalous"
Our concern is best summed up in the beautiful description of Doctor Knock "His ideal of social organisation is a form of hygiene organised around himself as “continual creator” and saviour". The satirical play set in the early 20th century charts Dr Knock's progress as he succeeds in medicalising the whole town, but "Knock is acting not in his own good ... nor even that of his patients, but in the interests of that third thing: la médecine"
Most "Minor Neurocognitive Disorders" (new DSM 5 diagnosis) remain the business of friends and families, just as most mild degenerative disorders of the joints remain the uninterrupted business of those who posses them, like most mildly enlarged prostates, mildly impaired ears and eyes, etc. ad infinitum. All this amounts to a resistance to be counted among the sick in this 'world as interpreted by medicine'.
Knock: A study in medical cynicism Med Humanities 2002;28:14-18 doi:10.1136/mh.28.1.14
Competing interests: No competing interests
Although we welcome the government’s attention to dementia and its timely diagnosis, we are writing to express concerns about the potential consequences of the recent Secretary of State for Health’s announcement of a ‘Dementia Case Finding Scheme.’ The proposal is that doctors should ‘proactively’ ask at risk patients - including all those aged 75 and over - about their memory, and offer a screening test.
This proposal has moved beyond the raising of awareness concerning dementia, and amounts to a clear intention to screen a section of the population for the condition, without the articulation of any evidence that it fulfils the established criteria for screening. This could lead to overtreatment, harm to patients, unnecessary expense and diversion of precious resources away from other services, including support for those individuals who are seeking help for a timely diagnosis of dementia or have already been diagnosed. Our argument is that, before any screening programme is introduced, there must be evidence that the benefits out way any potential harm . Screening for dementia must be assessed in the same way as any other screening intervention.
We acknowledge the prevailing view that early diagnosis (if an accurate diagnosis were possible) might allow patients and families longer to make decisions regarding their living accommodation, and other aspects of care, while the patient is functioning at the highest possible level. However, until we have clear evidence from well designed trials of the benefit/harm and cost implications of early as opposed to ‘timely’ (i.e. the right time for that person) diagnosis, we feel this would be better accomplished by everyone (for example coinciding with their eligibility for a free-bus pass), irrespective of any diagnosis, being encouraged to make plans for their future whilst still relatively fit and well. This is particularly important given the knowledge that very substantial proportions of the older population will die with dementia or severe cognitive impairment . Whilst we welcome the Government’s emphasis within the NHS Mandate on improving dementia care, the proposal to assess a prescribed section of the population for memory problems amounts to a non-evidenced population screening programme, which has not been subjected to the same scrutiny as other such programmes. The UK National Screening Committee (UKNSC) has a remit to advise the Government concerning all screening programmes, and gave very clear advice in June 2010 that screening for Alzheimer’s Disease ‘Should not be offered’ . The full report analysed the case for screening against the widely accepted World Health Organisation (WHO) Wilson-Jungner screening criteria, and concluded that:
‘The analysis of the literature against the above criteria indicates that the implementation of an evidence based routine screening programme for Alzheimer’s disease that will reduce mortality and morbidity is not yet a possibility.’
We have to ask why the Government has proposed a policy that is directly contrary to UKNSC advice?
Unlike most other NHS screening programmes, patients are not to be invited for screening, but healthcare professionals will be required to perform it opportunistically, for example, when admitted to hospital or attending their general practitioner. This means that patients, or their relatives or carers, will not have prior warning of the screening test, or an opportunity to be informed of either the potential benefits or harms of screening. The lack of both patient information and patient choice in this proposal are major concerns. Of course, where a general practitioner or other health care professional has reason to believe that the patient’s symptoms might be due to dementia, this does not negate them carrying out an assessment of memory and referring appropriately. However this is very different from ‘screening’ asymptomatic individuals indentified just by the virtue of attending the surgery.
While the healthcare community needs to work together to help reduce the stigma associated with a diagnosis of dementia, it remains a frightening diagnosis which the public are now very mindful of due to the success of the awareness campaigns. We should not underestimate the potential negative impact that such a diagnostic label can have. The NHS Mandate itself concludes that:
'Dementia is the illness most feared by people in England over the age of 55,'
and a recent study on the impact of a dementia diagnosis concluded that:
'Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration'.
If patients are aware that a visit to their GP could result in them being ‘examined’ for a diagnosis of dementia, irrespective of the reason for their attendance, then there is a very real danger that some patients will avoid seeking help from their GP when it is needed.
While treatment with medication can be helpful in improving the symptoms of dementia, the WHO 2012 document Dementia - A Public Health Priority states that ‘No treatments are currently available to cure or even alter the progressive course of dementia,’ reflecting the lack of evidence that early treatment with medication alters the course of the disease. There is a danger with screening for dementia that patients will simply end up on medication for longer, at extra cost to the NHS, but with no benefit to the patient.
We agree with the Government that dementia services need to improve, and this needs to be on the basis of evidence - otherwise we are likely to divert resources away from those areas of proven benefit to those with only belief to support them. The priority needs to be to improve access to diagnosis and support for patients and their families who are already seeking help - a huge challenge, which will require significant investment. To embark upon the proposed screening programme not only lacks an evidence base or a proper assessment of potential harms, but will also divert much needed funds from this important work, and overwhelm an already over-stretched service.
References
1. General Medical Services – Contractual Changes 2013/2014. Letter to the Chairman of the General Practitioner’s Committee December 6th 2012. Available at: https://www.wp.dh.gov.uk/publications/files/2012/12/GMS-Contract-letter.pdf
2. Brayne C, Fox C, Boustani M. Dementia Screening in Primary Care is it Time? JAMA November 28, 2007: 298,20:2409-2411 download jama.ama-assn.org
3. Brayne C Making Alzheimer’s and dementia research fit for populations. Lancet 2102: 380, 1441-43.
4. The Mandate: A mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015. Available at: https://www.wp.dh.gov.uk/publications/files/2012/11/mandate.pdf
5. The UK NSC policy on Alzheimer's Disease screening in adults (Jun 2010). Available at: http://www.screening.nhs.uk/alzheimers
6. Bunn F, Goodman C, Sworn K, Rait G, Brayne C, et al. (2012) Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies. PLoS Med 9(10): e1001331. doi:10.1371/journal.pmed.1001331 Available at http://www.plosmedicine.org/article/info:doi%2F10.1371%2Fjournal.pmed.10...
7. WHO Policy Document (2012). Dementia - A Public Health Priority. Available at: http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf
Competing interests: No competing interests
I was pleased to read Professor Burns' considered reply to comments made in response to the above report.
Two areas still concern me: firstly that policy makers, whilst well-intentioned, don't necessarily know the views of those who are directly affected by the policy; and secondly that the detection of cognitive impairment whilst in hospital risks being treated as an end-point of diagnosis rather than one aspect of assessment.(1)
References:
(1) Russ, T et al Dementia in acute hospital inpatients: the role of the geriatrician Age and Ageing 2012; 0: 1–3
Competing interests: No competing interests
Dear Sir
Drs Gordon, Hilton and Sharvill raise interesting points about the current position of dementia care highlighted by the Prime Minister's Challenge in the BMJ (Kmietowicz, Z. - Cameron launches challenge to end "national crisis" of poor dementia care, 27 March 2012, BMJ 2012;344:e2347; Gordon, P. - Taking dementia seriously, 18 April 2012, BMJ 2012;344:e2745; Hilton, C. - Investing in new services is key, 18 April 2012, BMJ 2012;344:e2746 and Sharvill, N. - What are the benefits of early diagnosis?, BMJ 2012;344:e2747).
Dr Gordon is right to highlight the challenge of turning the multi-faceted nature of dementia into a straightforward message. The detection of dementia when people are in hospital is important. Screening is not recommended by the National Screening Committee but we are suggesting enquiring about memory problems and diagnosing dementia (not screening) as a way of raising the profile of dementia and improving quality of care. Dr Hilton welcomes this approach and rightly highlights the need for people in hospital to be appropriately trained to back this up.
Dr Sharvill questions the benefits of early diagnosis. It is wrong to suggest that people with dementia are different to those with "serious disease" and that others who are "more needy" should take priority. An early and timely diagnosis is important because it gives people a definitive answer to complaints which could well be causing distress and anxiety (and reassures those who might have memory problems but do not have dementia). This is what people with dementia want and means interventions can take place to avoid crises (which occur inevitably and are predicted by Dr Sharvill). The economic benefit - avoiding unnecessary admission and institutionalisation - is well known.
In any other branch of medicine a diagnosis rate of 42% would be scandalous.
No one can argue that dementia is not one of the greatest health and social care challenges we face, that national crisis does not underestimate the challenge, and that the ability to push improvements in the quality of care for people with dementia and their carers further and faster by the PM’s Challenge is a great opportunity.
I would be very happy to visit Dr Sharvill in his surgery to answer his question personally.
Alistair Burns
National Clinical Director for Dementia - Department of Health
Professor of Old Age Psychiatry - University of Manchester
Clinical Director, Manchester Academic Health Science Centre
Consultant Old Age Psychiatrist - Manchester Mental Health and Social Care Trust
Competing interests: Editor, International Journal of Geriatric Psychiatry National Clinical Director for Dementia Occasional expert Court report
Many thanks for publishing my letter.
I note that the printed version differs from the original in one important point: in paragraph 3 'onto' has been edited to 'into'. 'Onto' was a deliberate statement of how care for older mentally ill people is being displaced from state provision for treatment and care towards businesses and altruistic, often untrained and voluntary community resources.
Your attention to this correction would be appreciated.
Competing interests: No competing interests
It is indeed welcome that our government is taking dementia seriously and I support the three pronged approach that our Prime Minister has set out.(1) However, yet again, we find that the language used by those in high authority is the language of fear. This ‘national crisis’, we should make clear, is due to the increasing ageing of our population and not to any change in the disease entity itself. It is then unwise to talk in war-like terms of ‘fighting back.’(2) Dementia is not the same as cancer or HIV and if such parallels are used they should be carefully explained.
In the BMJ there has been much debate about screening tests for other conditions but I am not aware of the evidence for screening for signs of early dementia, in the age group set out here. Furthermore, we do not know what impact such screening for early signs might have both for the individual and society at large.(3)
In England incentivised care is being planned for screening and Dr Hilton considers “the financially incentivised cognitive screening of older people admitted to hospital is also overdue and very welcome.” Incentivised care for depression and the use of the PHQ-9 screening test to establish severity has already been shown to have had unforeseen consequences.(4)
Some have suggested the routine use of the 4-item Abbreviated Mental Test score (AMT-4) in our Accident and Emergency departments.(5) It is a very crude measure, which does not differentiate between delirium and dementia. Given that in such circumstances our elderly are especially vulnerable and may also be physically unwell, we must consider carefully whether this is the right time and place for such screening. Medicine has a long track record of relying upon holistic skilled medical assessments and we should only depart from such with caution.
Our acetyl-cholinesterase inhibitors are not disease modifying. If I had Alzheimer’s disease I would want to be given the opportunity to try them for the potential of mild symptomatic relief but I would also want the truth of any medication to be discussed with me in a balanced and accurate manner. There is evidence that this is not happening.(6)
Simplified approaches bring about simplified answers. It is likely that the heavy-handed prescribing of anti-psychotics(7) for our vulnerable elderly will not be helped by such polemics of fear. David Cameron talks as if dementia were a simple entity and as if science had its measure. We agree with the Prime Minister that we want to improve dementia assessment, care and understanding but we must remember that we are facing a condition which is complex and which deserves a more considered response than some of these headline measures.
(1) BMJ2012;344:e2347 Cameron launches challenge to end “national crisis” of poor dementia care. Published 27 March 2012
(2) Williamson T. Defusing the Dementia ‘time bomb’ Mental Health foundation 16 Feb 2012
(3) Gordon, P and Gordon, S. Issues around early diagnosis of Alzheimer’s disease BMJ 2011;343:d6613
(4) Mitchell, C, Dwyer, R, Hagan T & Mathers, N. Impact of the QOF and the NICE guideline in the diagnosis and management of depression. British Journal of General Practice. Volume 61, Number 586, May 2011
(5) Schofield I et al. Validity of the 4-item Abbreviated Mental Test in Accident & Emergency. Chief Scientists Office, Scottish Government
(6) BMJ2012;344:e1086 How the FDA forgot the evidence: the case of donepezil 23 mg Published 22 March 2012
(7) Banerjee, S. The use of antipsychotic medication for people with dementia: Time for action A report for the Minister of State for Care Services by Professor Sube Banerjee. Nov 2009
Competing interests: No competing interests
The BMJ is right to draw our attention to the Prime Minister’s positive speech about ending the ‘national crisis’ of dementia care. (BMJ 344: 2)
He said that he wants the UK to be a world leader in dementia: he is clearly not aware that it used to be, but that over the last two decades it has fallen behind.(1) His funding boost for dementia research is extremely welcome, but will not, at least in the short term, directly improve patient care. Resourcing clinical and social services are needed to resolve the present inadequacy and recurrent scandals in services.
The financially incentivesed cognitive screening of older people admitted to hospital is also overdue and very welcome: but, taking into account the current low levels of dementia diagnosis nationally, is the infrastructure sufficiently resourced with adequate numbers of trained staff available to follow them up and make an impact on the quality of the lives of patients and their carers? Probably not.
His ideas of raising awareness are old-hat. The Alzheimer’s Society and others have done a wonderful job in raising awareness of dementia, but it has not solved the problem of providing adequate professional treatment and care. The plan to ‘encourage the creation of 20 "dementia-friendly communities" where individuals, businesses and the state work together to support people with dementia.’ (2) seems yet another way to displace government health service provision onto the communities.
Other ideas are evolving from clinical practice. Recent evidence has shown that investing in new services can result in lower health care costs for older people. The RAID (Rapid Assessment Interface and Discharge) model of acute liaison hospital services (3) and the Gnosall project for dementia care (4) are good examples. They require initial financial expenditure, but should provide better and more cost effective services, for which the government might then feel justifiably proud.
1. Old Age Psychiatrist, (Royal College of Psychiatrists, Old Age Faculty Newsletter) 21st Anniversary Edition 1989-2010 2011; 53 (http://www.rcpsych.ac.uk/specialties/faculties/oldage/aboutthefaculty/ne...)
2. BBC News Dementia: PM promises push to tackle 'national crisis', 26 March 2012; http://www.bbc.co.uk/news/health-17507678
3. Parsonage M, Fossey M. Economic Evaluation of a Liaison Psychiatry Service. Centre for Mental Health, 2011
4. Greaves N, Greaves I. The Gnosall project: setting new benchmarks for dementia care. J Care Serv Manag 2011; 5: 49-52
Competing interests: No competing interests
Please can someone educate me as to why an early diagnosis is so important in dementia. We already screen for and treat vascular risk factors and mild cognitive impairment is extremely common. The demand for referral to memory clinics is growing; the expectation is that something can be "done" with the result. At the same time services for people with significant disease are lacking. Whilst in favour of more research and treatment options I am yet to be convinced that a diagnostic label of dementia is 100% beneficial to everybody. I see my role as a GP is to do simple memory assessment and cognitive function testing and if basically OK reassure for now and review if things worsen. As the NHS total pot is shrinking the more money spent on this large cohort the less available for the more needy. What am I missing please?
Competing interests: No competing interests
Re: Cameron launches challenge to end “national crisis” of poor dementia care
We would like to present evidence to counter the assertions (unreferenced) made by Dr Rasmussen and colleagues (1) regarding our letter of 11 December (2).
Firstly, Rasmussen and her colleagues are concerned that 400 000 patients with dementia in the UK fail to receive a diagnosis. This figure is an estimate extrapolated from data which is now nearly 20 years old (3). They make the assumption that all these notional individuals would benefit from going through a diagnostic process during their lifetime. There is no evidence to support this assumption, and no trial has been done to show that the proposals will benefit patients, fail to cause substantive harm, or just produce lead time bias and unwanted diagnoses of Mild Cognitive Impairment (a poor predictor of dementia (4; 5)).
Brayne (6) eloquently summarises the potential harm of screening for dementia:
“Misidentification of at-risk individuals would carry formidable consequences for individuals and their families as well as for health and social services. Existing strains on most health and social care systems dealing with large numbers of frail older people are considerable, and most could not cope with large numbers of false positives on screening tests.”
These proposals focus on non-evidenced screening, which fails to address the social and medical care needs of people with more severe illness. We are unaware of any proposals to increase resources for outpatient departments or community care, and so have no reassurance to counter Brayne’s concerns that existing services will be overwhelmed. The result can only mean a poorer service for those with the greatest need.
We have not suggested that a diagnosis solely causes harm. However, the potential for harm generated by the current proposals does not even seem to have been considered, far less tested. To suggest that a proper assessment of harms may ‘fuel the fire of stigma’ is both unhelpful and irresponsible. Whilst it has been the established wisdom that giving a diagnosis reduces stigma, the reality is far more complex. (7; 8) One of the most effective antidotes to stigma is effective treatment. (9; 10) Providing support and interventions (such as cognitive behavioural therapy, community support and care support packages (11)) known to have clinically significant benefits should therefore be prioritised.
Secondly, Rasmussen et al agree with us that ‘Screening for Alzheimer’s Disease ... is not appropriate’. They focus on ‘legitimate case finding in those known to be at risk of dementia’ and fail to comment on the intention to include all patients aged over 74 in the scheme (12) - which can only be described as population screening. The proposals constitute a need for general practitioners to ask patients about memory symptoms as part of a ‘check up’. We know that many people who notice problems with their memory do not have a clinically significant dementia, nor will they progress to develop it. This is, therefore, in effect a poor screening test. It is irresponsible to embark on such screening without first articulating what the specific benefits are for those sections of the population to whom it is suggested that diagnosis is currently being ‘denied’, investigating hazards, including the cost/risk ratio, and considering patient autonomy.
Rasmussen et al seem to be advocating screening for vascular dementia in those with vascular risk factors (coronary heart disease and stroke). These patients, however, should already have received advice, support and medication to reduce their cardiovascular risk and therefore the diagnosis of vascular dementia will not influence their medical management or the course of the disease.
Thirdly, of course it would be desirable to identify and address treatable causes of cognitive impairment. Before these are screened for, however, we need to know how many such cases are currently being missed and that the benefits of treating these outweigh the harms of screening. (13)
Fourthly, we welcome the fact that these are only proposals for consultation at this stage. While the voices of experts in the field, organisations such as the Alzheimer’s Society and industry are important in this debate, as a group of general practitioners, psychiatrists for older adults and patient/carer representatives, we hope that any such consultation will be genuine, and that all perspectives in this vitally important discussion will be listened to. Given that our decisions here have the potential to affect so many of our older adults, this debate really needs to have a multidisciplinary approach including public health, sociologists, the medical humanities, philosophers and a complete representation of society, not just those with dementia, their carers and doctors.
A civilised society should help its citizens according to capacity to benefit, not diagnosis. The focus should therefore be on improving provision of interventions which have been proven to have significant benefit, such as carer provision and support, and directing this support to those who really need it.
1. Rasmussen, Jill, et al. Re: Open Letter to The Prime Minister and the Chief Medical Officer Regarding Proposals to Introduce Screening for Dementia. BMJ. [Online] 14 December 2012. [Cited: 16 December 2012.] http://www.bmj.com/content/344/bmj.e2347/rr/620234.
2. Brunet, Martin D, et al. Open Letter to The Prime Minister and the Chief Medical Officer Regarding Proposals to Introduce Screening for Dementia. BMJ. [Online] 11 December 2012. [Cited: 16 December 2012.] http://www.bmj.com/content/344/bmj.e2347/rr/619428.
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. Mild cognitive impairment in the general population: occurrence and progression to Alzheimer disease. Palmer, Katie, et al. 2008, Am. J. Geriatr. Psychiatry, Vol. 16, pp. 603–611.
5. Optimizing mild cognitive impairment for discriminating dementia risk in the general older population. Stephan, BC, et al. 8, August 2010, Am J Geriatr Psychiatry, Vol. 18, pp. 662-73.
6. The elephant in the room — healthy brains in later life, epidemiology and public health. Brayne, Carol. s.l. : Nature, 14 February 2007, Nature Reviews Neuroscience, Vol. 8, pp. 233-239.
7. Biogenetic explanations and public acceptance of mental illness: systematic review of population studies. Angemeyer, Matthias C, et al. 5, November 2011, Br J Psych, Vol. 199, pp. 367-372.
8. Window tax. Gordon, Peter J. 4, 2012, Mental Health and Social Inclusion, Vol. 16, pp. 181-187.
9. Mental health: A report of the Surgeon General--Executive summary. Satcher, David. 1, Feb 2000, Professional Psychology: Research and Practice, Vol. 3, pp. 5-13.
10. Sontag, S. Illness as Metaphor. New York : Farrar, Straus and Giroux, 1978. In: Castro, Arachu and Farmer, Paul. Understanding and Addressing AIDS-Related Stigma: From Anthropological Theory to Clinical Practice in Haiti. Am J Public Health 2005;95:53-59.
11. Clinical review: Dementia. Burns Alistair, Iliffe Steve. 5 February 2009, BMJ, Vol. 338, p. b75.
12. Armstrong, Richard. General Medical Services – Contractual Changes 2013/2014. Letter to the Chairman of the General Practitioner’s Committee. Department of Health. [Online] 6 December 2012. [Cited: 16 December 2012.] https://www.wp.dh.gov.uk/publications/files/2012/12/GMS-Contract-letter.pdf.
13. Principles and practice of screening for disease. Wilson, James MG and Jungner, Gunnar. Geneva : WHO, 1968, Public health papers, Vol. 34.
Competing interests: No competing interests