From the Frontline

Bad medicine: dementia

BMJ 2012; 344 doi: http://dx.doi.org/10.1136/bmj.e3859 (Published 1 June 2012)
Cite this as: BMJ 2012;344:e3859

Recent rapid responses

Rapid responses are electronic letters to the editor. They enable our users to debate issues raised in articles published on bmj.com. Although a selection of rapid responses will be included as edited readers' letters in the weekly print issue of the BMJ, their first appearance online means that they are published articles. If you need the url (web address) of an individual response, perhaps for citation purposes, simply click on the response headline and copy the url from the browser window.

Displaying 1-6 out of 6 published

Timely debate

Dr Spence in his Bad Medicine series spares no specialty in his wish to encourage debate. Responses are varied, often defensive, and I have been interested to see the response so far of my own specialty to his piece on dementia (1).

The early diagnosis of dementia is an area of legitimate debate. New definitions of dementia (and cognitive disorders more generally) are to be presented in the forthcoming editions of ICD11 and DSM-V. The universal problem that these classifications face is that thresholds of disorders rarely have hard and fast demarcations. In the particular case of ‘early dementia’ it is possible that in the genuine wish to pick up an irreversible condition we are inadvertently over-inclusive when making a judgment on what it means to have ‘significant’ functional impairment (2). Many other illnesses have seen this gradual mission creep (3). The risk is that we ensnare a fearful populace: those of our elderly who may never progress to dementia (4). For this reason I would suggest that we need a diagnostic system that considers risk of disease and gives emphasis to the longitudinal course of the condition. Dementia is by definition a progressive condition; much subtle cognitive impairment is stable or indeed improving and therefore by definition not dementia.

More generally I am worried that we have oversimplified the concept of Alzheimer’s. At the level of policy, implementation, advocacy and medical journalism most of the talk is as though Alzheimer’s disease and its early diagnosis were quite clear-cut things, when the reality is far more complicated (5).

Such a reductionist approach and the language of fear associated with it (generally unremittingly grim) is actually worsening stigma. Dr Spence’s language falls into this trap but the questions he raises deserve wider discussion and open debate may help reduce stigma.

The informed views of older people, whether they have cognitive loss or not, have not been properly sought. Such consultation needs to happen amidst honest airing of what is to age and the far from simple implications of early memory loss. It is important that such discussions do not rely solely upon the dominant bio-medical paradigm and that they include social and historical understandings of brain ‘disease’ (6).

In addition to the ‘post-diagnostic checklists’ which are needful, pragmatic but unavoidably gloomy, we should talk about the positive attributes that stay with people. We must not allow overwhelming negativity to dictate popular and professional understanding. Here I agree with Van Rensburg et al about the power of words and ‘therapeutic nihilism’. However I disagree with the same authors that we should not be concerned about suicidal behaviour (7). I have seen suicidal behaviour associated with cognitive loss and suggest only that we must keep our minds open to the potential risks of the enthusiasm for early diagnosis (8). A major theme of the issue of the BMJ in which this ‘Bad Medicine’ piece appeared was Assisted Dying.

The organisation Alzheimer Scotland suggests that in our approach to the detection of dementia we make a ‘timely’ diagnosis (9). I have argued here some of the reasons why I support this approach. I urge our profession to have an open debate on this. I suggest that we reflect on what we may learn from other specialties but insist we seek the informed views of our elderly.

References:

(1) Spence, D. Bad Medicine: Dementia. BMJ 2012: 344:e3859.

(2) NICE guideline 42 (updated) and in Scotland SIGN 86 guideline

(3) Gordon, P. How we risk getting it wrong in cognitive screening too BMJ 2012; 344:e4043

(4) Frances, A. DSM5 Minor Neurocognitive Disorder. Psychol Today. 2012, 16 Feb.

(5) Alzheimer’s Disease International. World Alzheimer report 2011: The benefits of early diagnosis and intervention. 2011. www.alz.co.uk/research/WorldAlzheimerReport2011ExecutiveSummary.pdf.

(6) Ballenger, J. Blog: To Conquer Confusion. The Alzheimer’s Hockey Stick. 20 Jun 2012. http://conquerconfusion.wordpress.com/2012/06/20/the-alzheimers-hockey-s...

(7) Van Rensburg, Al-Salihy, Rubinsztein. Rapid Response reply to Bad Medicine: Dementia. BMJ 2012: 344:e3859.

(8) Brian Draper, Carmelle Peisah, John Snowdon, Henry Brodat Early dementia diagnosis and the risk of suicide and euthanasia Alzheimer’s & Dementia 6 (2010) 75–82. New South Wales, Australia

(9) Alzheimer Scotland. Action on dementia

Competing interests: None declared

Peter J. Gordon, Old Age Psychiatrist

NHS, Forth Valley

Click to like:

Des Spence’s diatribe (1) against the value of early diagnosis of dementia and the value of memory clinic services requires rebuttal.

The notion that clinicians would make a diagnosis of dementia rather than Mild Cognitive Impairment (MCI) for fear of media criticism is just pure speculation and the portrayal of dementia as the ultimate “devastating diagnosis” reinforces stigmatisation, fear and therapeutic nihilism. We should aim to promote an understanding of dementia through early diagnosis. This allows patients, their relatives and carers to accept and manage the condition with dignity. Screening and testing should reassure the anxious as well as identify those afflicted. Giving a diagnosis can allay patients’ fears of ‘going mad’ or ‘being stupid’ if it is seen in the context of a biological disorder rather than negative personality characteristics (2) and there is no conclusive evidence to justify concerns regarding the fear that disclosure might precipitate suicide (3).

We disagree that there is no evidence to support early diagnosis “changing anything”. There is evidence for the cost effectiveness of an integrated multidisciplinary memory clinic service (4). Memory clinics have also been shown to improve the quality of life of carers (5). Other studies show the value of psychosocial interventionsin alleviating carer distress and delaying nursing home placement (6,7). Services that signpost early to social care have been shown to delay institutionalisation in early stages of care giving (8) although these interventions may not reduce institutionalisation in those with more moderate or severe dementias (9).

Patients diagnosed with early dementia or MCI can take the very steps that patients with more advanced dementia can no longer take. They can be directed to consider advanced decisions such as making a will or setting up a power of attorney. They may re-consider the safety of their driving and the suitability of their current accommodation in relation to services and proximity to family.

Memory services see patients with different stages of dementia. The value for patients and carers in establishing a diagnosis, and understanding new symptoms in this context like suspiciousness, depression, delusions and hallucinations cannot be underestimated. Patients with dementia even in the early stages, who live alone, may forget to eat or care for themselves and reject offers of support. The recognition of the diagnosis allows steps to be taken to ameliorate such situations and provide safe care to very vulnerable individuals. It is true that the currently available anti-dementia drugs have limited efficacy but in a decent memory clinic service a biopsychosocial approach prevails.

1. Spence BMJ 2012: 344:e3859.
2. Husband H J, The psychological consequences of learning a diagnosis of dementia: three case examples. Aging and Mental Health 1999; 31:79–183.
3. Pinner G, Bouman W. What should we tell people about dementia? Advances in Psychiatric Treatment 2003;9:335-341.
4. Wolfs CAG, Carmen DD, Kessels A, Severens JL, Verhey FRJ. Economic evaluation of an integrated diagnostic Approach for Psychogeriatric Patients. Arch Gen Psychiatry 2009; 66:313-323.
5. Logiudice D, Wlatrowicz W, Brown K, Burrows C, Ames and Flicker. Do Memory Clinics Improve the Quality of Life of Carers? A randomised pilot trial. Int J Ger Psychiatry 1999:14:626-632.
6. Mittelman MS, Ferris SH, Shulman E, Steinberg G, Levin BA. family intervention to delay nursing home placement of patients with Alzheimer disease. JAMA 1996;276:1725-1757.
7. Brodaty H, Gresham M and Luscombe, G. The Prince Henry Hospital dementia care-givers’ training programme. Int J Ger Psychiatry 1997;12:183-192.
8. Gaugler JF, Kane RL, Kane RA, Newcomer R. Early Community Based Utilisation and its effects on institutionalization in Dementia Caregiving. The Gerontologist 2005: 45:177-185.
9. Conner DWO, Politt PA, Brook CPB, Reiss BB, Roth M. Does early intervention reduce the number of elderly people with dementia admitted to institutions for long term care? BMJ 1991;302:871875

Letter submitted by:
Van Rensburg M ST6 in Old Age Psychiatry, Cambridge and Peterborough Mental Health Trust
Al-Salihy ST5 in Old Age Psychiatry, Norfolk and Suffolk Foundation Trust
Rubinsztein JS, Consultant in Old Age Psychiatry, Norfolk and Suffolk NHS Trust
judy.rubinsztein@doctors.org.uk

Competing interests: None declared

Judy S Rubinsztein, Old Age Psychiatrist

Marelna Van Rensburg, Zerak Al-Salihy

Norfolk and Suffolk Foundation Trust, Wedgwood House, West Suffolk Hospital, Bury St Edmunds, IP33 2QZ

Click to like:

I was disappointed to read Des Spence's article in the BMJ on the 9th June.I am a Retired Psychiatrist for Older Adults and was diagnosed with very early onset vascular dementia in 2005.

My experience as a professional is that people want to know what is causing their symptoms, whether these may be Cancer or Dementia. I was certainly relieved to know there was a cause for my symptoms, in my case treated by more effective control of my blood pressure. However I had no follow-up for three and a half years during which I thought it was not progressing but without further tests I could not be sure that I did not have a mixed pathology with Alzheimer's disease.

The article refers to 'big pharma' but many people with dementia cannot take the pills and they are not effective in all types of dementia. Dignosis is not to ascertain simply that there are cognitive changes but also to try to ascertain the type of dementia of which there are many. Older age may be a risk factor but dementia, especially rarer forms of Alzheimer's Disease, Lewy Body Disease and vascular disease (not necessarily stroke)occur in the decades before 60 and the implications of late diagnosis when the person is the wage earner in a family with children can be very difficult.

Treatment in the broadest sense is invaluable to all those with an early diagnosis as they can prepare with their families for the likely progress of the illness. They can learn about the help that maintaining activities and even learning new ones can bring. And, very importantly, carers can get the essential advice and help that will support them before a crisis is reached and this can usually prevent such a situation. There are many of us with an early diagnosis who are able to talk about these things, I suggest that Des Spence tries to meet some of us.

Competing interests: Person with a diagnosis of early dementia

Daphne R. Wallace, Retired

Alzheimer's Society, 15 Holme Park, Bentham, Lancaster LA2 7ND

Click to like:

As usual, Des Spence provides an interesting and thought-provoking article (1) and, as usual, I find myself agreeing with much of his argument. Ending the ageism in our communities and society is long overdue. However, I must challenge his assertion that the overdiagnosis of dementia is bad medicine (1).

Dementia is still drastically underdiagnosed. Spence's colleagues in the Greater Glasgow and Clyde area do a much better job than most in the UK, with a 70.2% detection rate compared with the atrocious national average of 43.3% (2). However, that still leaves a substantial proportion of people and caregivers in the west of Scotland, as well as in the rest of the UK, who are not benefiting from a diagnosis at all nevermind an early one.

Contrary to Spence's assertion (1), there is much evidence of the benefits for early diagnosis of dementia. Acknowledging the continued disputed interpretation of the evidence in favour of pharmacological therapy, there are other considerable benefits with an early diagnosis. Provision of the diagnosis, information and education reduces anxiety and uncertainty over symptoms, improves quality of life for patients (3) and allows them to be involved in decisions regarding their care and in planning for the future. Caregiver counselling and support reduces caregiver morbidity and delays institutionalisation of patients (4). Early provision of community support services reduces institutionalisation (5). Occupational therapy delivered cognitive training for patients and behavioural interventions for caregivers improves quality of life and health status of both (6) and is cost-effective (7). Physical exercise may be beneficial.

Another benefit of referral to a specialist memory assessment service is the detection of non-dementia diagnoses allowing appropriate counselling for the patient and caregiver. Additionally, mild cognitive impairment can be correctly identified and appropriate follow up arranged.

Undoubtedly, there may be harms associated with early diagnosis, such as increased distress and inappropriate early loss of control over the person's own affairs. Information about diagnosis, prognosis and services is inconsistent (8) and caregivers may not be aware or avail of services (9). However, appropriately designed services can and should meet these challenges.

Older people are entitled to know what is causing their ill-health be it an acute illness, metastatic cancer or progressive organ failure, of which dementia is but one form.

(1). BMJ 2012;344:e3859
(2). www.alzheimers.org.uk/dementiamap
(3). Int J Geriatr Psychiatry 2007;22:782-8
(4). J Am Geriat Soc 2003;51:657-64
(5). Gerontologist 2005;45:177-85
(6). J Gerontol A Biol Sci Med Sci 2007;62:1002-9
(7). BMJ 2008;336:134-8
(8). Audit Commission. Forget me not 2002
(9). Int J Geriatr Psychistry 2005;20:537-46

Competing interests: I have received honoraria from manufacturers of drugs used in the treatment of dementia.

Stephen A. Todd, Consultant Geriatrician

Western Health and Social Care Trust, Altnagelvin Hospital, Glenshane Road, Londonderry, BT48 6SB

Click to like:

I very much agree with the central message in Des Spence's article. The National Dementia Strategy stresses the need to screen the elderly population for dementia and to provide an early diagnosis. The possible benefits of doing this are at best questionable, whereas the psychological impact of such a devastating diagnosis is probably immeasurable.

A mild degree of cognitive impairment accompanies old age so very frequently that the application of a diagnosis to this level of impairment through an "early detection" exercise risks medicalising normal ageing. The general public naturally tends to assume that catching a disease early will make it easier to stop the problem getting worse, and the language used in the National Dementia Strategy reinforces that belief, when in fact we are unfortunately unable to modify the progression of dementia. We, Old Age Psychiatrists, very much want to support dementia sufferers and their carers. However, the systematic and unsolicited screening for dementia has definite risks and only doubtful benefits.

Competing interests: None declared

Rafael Euba, Consultant Old Age Psychiatrist

Oxleas NHS Foundation Trust, Memorial Hospital, Shooters Hill, London SE18 3RZ

Click to like:

You make some valid points, but I think that suggesting that the diagnosis of dementia will lead to "misery and the theft of wellbeing from millions of old people and their families" is a bit extreme. Diagnosis may allow time for patients and their families to get their affairs in order, including planning for end of life, without necessarily leading to many people "vowing to take their own life." It may also allow the identification of reversible causes of dementia.

In addition, I don't believe that mild cognitive impairment is difficult to distinguish from early dementia. The former relates to loss of memory beyond expected for age and education level. There is no loss of higher function or ability to perform activities of daily living. Dementia involves memory loss and other cognitive disturbances e.g. aphasia, apraxia, agnosia and loss of executive functioning. In dementia these symptoms and signs cause a loss of occupational and social function. I don't see why you need "the latest imaging and testing" to distinguish between the two. A history and examination should do, although further tests may be required if dementia is identified to rule out secondary causes of dementia and help idenitfy subtype.

Competing interests: None declared

Sean Ninan, Specialist Registrar, Elderly Medicine

Hull Royal Infirmary, Anlaby Road, Hull. HU3 2JZ

Click to like:

THIS WEEK'S POLL