Disclaimer: the transcript of this film (and the film itself) does not represent the views of any organisation. Any opinions offered by Hole Ousia and the filmmaker are made in a personal capacity only.
This is a film about memory loss in old age. The title of the film ‘Primum non forgetful’ explores part of our Hippocratic Oath when it comes to the medical approach to memory loss. Primum non nocere, as stated by Hippocrates, translates as: first, above all, do no harm. This film, Primum non forgetful, argues that we have lost sight of the range of reasons behind forgetfulness in age.
This film is presented in two parts: the first part will explore the current drive and seemingly universal imperative to diagnose dementia early. Increasingly this determination is effectively translating into widespread cognitive screening of our elderly. Whilst it remains important to tackle the delayed diagnosis of dementia the film will close by suggesting potential harms of the urge to diagnose earlier and earlier.
The benefits of early diagnosis of dementia are well rehearsed, such that we have absolute agreement between medical, political, and third-sector domains.
For early diagnosis only the benefits are presented. In stark contrast there is virtually no mention of harms. This film will attempt, as best one can in such a short film, to redress this.
The World Health Organisation, in 1968, established ten criteria (known as Wilson’s criteria) that all require to be filled for any health screening proposal. It is quite clear that cognitive screening fails in several of these necessary criteria, particularly in criterion 7: “The natural history of the condition, including development from latent to declared disease should be adequately understood.”
Unlike screening, the concept of early diagnosis generally has no intellectual framework, rigour, research, or systematic reviews.
This film will conclude by raising potential harms associated with early diagnosis of dementia. For clarity these will be presented in five groups:
(1) False positive diagnoses
The earlier one tries to diagnose dementia the greater the uncertainty. What we do know, from epidemiology involving very large numbers (where pharmaceutical trials have found that current medicines are not ‘disease modifying’), is that no more than 50% of our elderly with mild amnesia progress to dementia. It is in this group that we risk a high number of false-positives. A diagnosis of ‘Alzheimer’s’ is a life changing diagnosis. Our elderly are generally uncomplaining and may not live long enough to refute such a diagnosis.
(2) Confusing meanings
Going back to basics, “dementia” is a clinical syndrome, describing a condition of progressive deteriorating brain function ending in death. “Alzheimer’s disease” is a pathological diagnosis, based on the post-mortem findings in the brain of microscopic patterns.
One problem is that these definitions are at best confused and at worst ignored.
Another problem is that, as more research is done, it is becoming clear that clinical “dementia” and pathological “Alzheimer’s disease” correlate much more poorly than was once thought. The “pathology” has been found as early as adolescence.
(3) Informed Consent
There has been much recent debate about screening: in particular revealing to the public for the first time the harms associated with breast-screening. Dr Margaret McCartney has contributed to this debate and in her book, The Patient Paradox where she said “There is another problem. If it looks like breast cancer screening is picking up more cancers, this is likely to include a lot of DCIS. But while DCIS is frequently diagnosed at screening, as we have seen, its progress is less certain.”
This debate has revealed that most people had not heard of DCIS (Ductal carcinoma in-situ) before the debate about the harms of breast-screening reached the wider press. I am sure that most people have not heard of mild cognitive impairment. As a thought experiment, let us paraphrase the quote on breast screening for that of cognitive screening:
“There is another problem. If it looks like cognitive screening is picking up more dementia, this is likely to include a lot of MCI (Mild cognitive Impairment). But while MCI (Mild cognitive Impairment) is frequently diagnosed at screening, as we have seen, its progress is less certain.”
One conclusion of the debate was that people need full information regarding potential harms as well as benefits in order to give truly informed consent to screening.
(4) Redefining ageing
Increasingly, any memory loss in old age is being referred to as “Alzheimer’s disease”, both within the medical profession and across wider society. This is happening to such an extent that sociologists have coined the term ‘Alzheimerisation’ and proposed that this encourages a society which feels a need to medicalise ageing. Stephen Post was the first to express concern about a society that defines its older citizens by any potential cognitive loss.
(5) Promoting reductionism
Research has shown conclusively that dementia of an Alzheimer’s type is a life-course disorder based on multiple overlapping aetiologies. The historic and reductionist understanding of Alzheimer’s in old age as a discrete disease needs correcting.
To conclude: early diagnosis is everywhere. Talk of harm is nowhere. When it comes to memory loss why have we forgone our oath: primum non nocere?
BOOKS that contributed to Primum non forgetful:
1. ‘Self, Senility, and Alzheimer’s Disease in Modern America. A History.’ By Jesse F. Ballenger. 2006. The Johns Hopkins University Press
2. ‘The Nun Study: Ageing with Grace.’ By David Snowdon. 2001
3. ‘Stigma: Notes on the management of spoiled identity.’ By Erving Goffman. Prentice-Hall. 1963
4. ‘Dementia: Mind, meaning and the person.’ By Julian C. Hughes, Stephen J. Louw, Steven R. Sabat. OxfordUniversity Press. 2006
6. ‘The Experience of Alzheimer’s Disease: Life Through a Tangled Veil.’ By Steven R. Sabat. Wiley-Blackwell. 2001
7. The Patient Paradox. By Margaret McCartney. Pinter & Martin Ltd. 2012
8. Intelligent Kindness: Reforming the Culture of Healthcare. By J. Ballatt & P Campling. RCPsych books. 2012
9. The Enigma of Health. By Hans-Georg Gadamer. StanfordUniversity Press, 1996
10. The Science Delusion: Freeing the Spirit of Enquiry. By Rupert Sheldrake. Coronet. 2012
11. Reckoning with Risk: learning to live with uncertainty. By Gerd Gigerenzer. Penguin. 2002
12. Hippocratic Oaths: Medicine and its Discontents. By Raymond Tallis. Atlantic Books. 2005
13. In Defence of Wonder (And other philosophical reflections). By Raymond Tallis. Acumen. 201
14. Aping Mankind: Neuromania, Darwinitis and the misrepresentation of humanity. Tallis, Raymond. Acumen (published June 2011)
15. The Myths we Live By. By Mary Midgley. Routledge. 2004
16. Mammography Screening: Truth, Lies and Controversies. Gøtzsche, Peter C. Radcliffe Publishing Ltd. 2012
17. Where Biology Meets Psychology – Essays edited by Valerie Gray Hardcastle, 1999 Massachusetts Institute of Technology
18. Beyond the scientific revolution: The Third Culture. Brockman, John.1st Touchstone Ed edition. May 1996
19. The view from nowhere. Nagel, Thomas. “Philosophy is the childhood of the intellect, and a culture that tries to skip it will never grow up.” Published 1989. Oxford University Press
20. Bad Science. Goldacre, B. 2009, Fourth Estate, London
21. Medical Sociology and Old Age: Towards a Sociology of Health in Later Life. Higgs P and Rees Jones, I. 2009
22. Early Diagnosis of Alzheimer’s Disease/Edition 1 by Leonard F. M. Scinto (Editor), Kirk Daffner (Editor), Kirk R. Daffner (Editor) Springer-VerlagNew York. 2007
23. Principles and Practice of Screening for Disease. World Health Organisation. Wilson & Jungner. Geneva. 1968
SCIENTIFIC PAPERS included in the film:
1. Angermeyer, M. C., et al Biogenetic explanations and public acceptance of mental illness: systematic review of population studies. The Br J Psychiatry (2011) 199: 367-372
2. Ballard, C. et al. Alzheimer’s disease. The Lancet, Volume 377, Issue 9770, Pages 1019 – 1031, 19 March 2011
3. Chaufan, C; Hollister B; Nazareno, N; Fox, P. Medical ideology as a double-edged sword: The politics of cure and care in the making of Alzheimer’s disease. Social Science & Medicine 74 (2012) 788-795
4. Draper, B., 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
5. Frances, A. DSM 5 Minor Neurocognitive Disorder. Psychology Today. 16 Feb 2012
6. Giaccone, G. , Thomas Arzberger, Irina Alafuzoff, Safa Al-Sarraj, Herbert Budka, Charles Duyckaerts, on behalf of the BrainNet Europe consortium New lexicon and criteria for the diagnosis of Alzheimer’s disease The Lancet Neurology, Volume 10, Issue 4, Pages 298 – 299, April 2011
7. Gregory, A., Jichaa, Erin L. Abnerb, Frederick A. Schmitt Preclinical AD Workgroup staging: pathological correlates and potential challenges. Neurobiology of ageing 2011.
8. Gringrich, N. Developing a national Alzheimer’s strategy equal to the epidemic. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. Volume 3, Issue 3 , Pages 239-242, July 2007
9. Mattsson, N., David Brax, and Henrik Zetterberg. To Know or Not to Know: Ethical Issues Related to Early Diagnosis of Alzheimer’s Disease. International Journal of Alzheimer’s Disease Volume 2010 (2010), Article ID 841941
10. Oksengard AR, Cavallin L, Axelsson R, Andersson C, Nägga K, Winblad B, Eriksdotter-Jönhagen M, Wahlund LO Lack of accuracy for the proposed ‘Dubois criteria’ in Alzheimer’s disease: a validation study from the Swedish brain power initiative. Dement Geriatr Cogn Disord. 2010;30(4):374-80.
11. Palmer, K., Backman, L., Winblad, B., Fratiglioni, L., 2008. Mild cognitive impairment in the general population: occurrence and progression to Alzheimer disease. Am. J. Geriatr. Psychiatry 16, 603–611.
12. Phelan, J. C., et al Adding moral experience to stigma theory. Social Science & Medicine; 64 (2007)
13. Porteri, C., Samantha Galluzzi, Cristina Geroldi, Giovanni B. Frisoni Diagnosis Disclosure of Prodromal Alzheimer Disease-Ethical Analysis of 2 Cases. Can. J. Neurol. Sci. 2010; 37: 67-75
14. Racine, E., Sarah Waldman, Jarett Rosenberg , Judy Illes; Contemporary neuroscience in the media. Social Science & Medicine 71 (2010) 725e733
15. Reisa A. Sperling et al Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease Alzheimer’s & Dementia 7 (2011) 280–292
16. Richards, M., and Brayne, C. What do we mean by Alzheimer’s disease? British Medical journal; 341; 10.1136/bmj.c4670 Published 12 October 2010
17. Richards, Marcus & Hatch, Stephani; Essay: Good news about the ageing brain BMJ 2011; 343
18. Rosow, K., et al. Countrywide strategic plans on Alzheimer’s disease: developing the framework for the international battle against Alzheimer’s disease. Alzheimers Dement. 2011 Nov;7(6):615-21
19. Thies, W. Stopping a thief and killer: Alzheimer’s disease crisis demands greater commitment to research. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. Volume 7, Issue 2 , Pages 175-176, March 2011
20. Vincent, J. A., The cultural construction old age as a biological phenomenon: Science and anti-ageing technologies. Journal of Aging Studies 22 (2008) 331–339
21. Wiggins, N. Stop using military metaphors for disease. British Medical Journal. Published 12 Jul 2012. BMJ 2012;345:e4706
22. Williamson T. Defusing the Dementia ‘time bomb’ Mental Health foundation 16 Feb 2012
23. Piko, BF. Physicians of the future: Renaissance of Polymaths? The Journal of the Royal Society for the Promotion of Health; December 2002; 122 (4), pp. 233-237
24. Sir John Batty Tuke; He described a new appearance which he called ‘miliary sclerosis,’ which now is known by the name of ‘senile plaques.’Journal of Mental Science 1914 60: 170-172
25. Curtice, M; Bashir, F; Khurmi, S; Crocombe, J; Hawkins, T and Exworthy, T: The proportionality principle and what it means in practice. The Psychiatrist (March 2011) Vol 35, Issue 3
26. Rose, S.P.R. The biology of the future and the future of biology Perspectives in Biology and Medicine – Volume 44, Number 4, Autumn 2001, pp. 473-484
27. Eisenberg, L; Science in Medicine: Too much or too little and too limited in scope? Am J Med. 1988 Mar; 84.
29. Moynihan, Ray. Reality Check: It’s time to rebuild the evidence base. British Medical Journal. 2011;342:doi:10.1136/bmj.d3004 (Published 25 May 2011)
30. Godlee, Fiona. Who should define disease? British Medical Journal;342:doi:10.1136/bmj.d2974. Published 11 May 2011)
32. Yi, Ming. BMJ Rapid response. Shall we define health first, then diseases? Neuroscience Research Institute, Peking. Published 13 May 2011
33. Van Weel, Chris. Incentivised care is no substitute for professional judgment. British Medical Journal. 338:b934 (Published 19 March 2009)
34. Shamail Ahmad, Martin Orrell, Steve Illiffe and Antonia Gracia. GP’s attitudes, awareness, and practice regarding early diagnosis of dementia. British Journal of General Practice, September 2010
35. Gregory A. Jichaa, Erin L. Abnerb, Frederick A. Schmitt Preclinical AD Workgroup staging: pathological correlates and potential challenges. Neurobiology of ageing 2011.
36. John A. Vincent. The cultural construction old age as a biological phenomenon: Science and anti-ageing technologies. Journal of Aging Studies 22 (2008) 331–339
37. Claire Bamford, Sharon Lamont, Martin Eccles; Louise Robinson, Carl May and John Bond; Disclosing a diagnosis of dementia: a systematic review; International Journal Of Geriatric Psychiatry. Int J Geriatr Psychiatry 2004; 19: 151–169.
38. Birks, J. (2006). Cholinesterase inhibitors for Alzheimer’s disease. Cochrane Database Systematic Reviews, 1, CD005593.
39. Alistair Burns et al, Effect of rivastigmine on delay to diagnosis of Alzheimer’s disease from mild cognitive impairment: the InDDEx study Lancet Neurol 2007; 6: 501–12
40. Marcia L. Chaves, Claudia C. Godinho, Diego Onyszko, Ana L. Camozzato. Mild cognitive impairment conversion rate to dementia in a community sample in Southern Brazil: the Pala study Alzheimer’s and Dementia, Volume 6, Issue 4
41. Nuffield Council on Bioethics, Dementia: ethical issues. 28 Bedford Square, LondonWC1B 3JS. 2008
42. Niklas Mattsson, David Brax, and Henrik Zetterberg. To Know or Not to Know: Ethical Issues Related to Early Diagnosis of Alzheimer’s Disease. International Journal of Alzheimer’s Disease Volume 2010 (2010), Article ID 841941,
43. National Institute for Health and Clinical Excellence (2006) Dementia: supporting people with dementia and their carers in health and social care. NICE-SCIE clinical guideline 42.
44. Eisenberg, Leon. Mindlessness and brainlessness in psychiatry. BJP May 1986 148:497-508; doi:10.1192
45. Banergee, Sube. The use of antipsychotic medication for people with dementia: Time for action. A report for the Minister of State for Care Services, commissioned and funded by the Department of Health. 12 November 2009
46. BMJ2012;344:e2347 Cameron launches challenge to end “national crisis” of poor dementia care. Published 27 March 2012
47. Williamson T. Defusing the Dementia ‘time bomb’ Mental Health foundation 16 Feb 2012
48. 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
49. Schofield I et al. Validity of the 4-item Abbreviated Mental Test in Accident & Emergency. Chief Scientists Office, Scottish Government
50. BMJ2012;344:e2346 Bad medicine: modern medicine. Published 28 March 2012
51. Ballenger, J. DSM-V: Continuing the Confusion about Ageing, Alzheimer’s and Dementia. H-Madness blog 19 Mar 2010
52. Russ, T et al Dementia in acute hospital inpatients: the role of the geriatrician Age and Ageing 2012; 0: 1–3
53.Matthias C. Angermeyer et al Biogenetic explanations and public acceptance of mental illness: systematic review of population studies. The British Journal of Psychiatry (2011) 199: 367-372
54. Schulze, B. Stigma and mental health professionals: A review of the evidence on an intricate relationship. 2007, Vol. 19, No. 2 , Pages 137-155
55. Beveridge, A. Reading About . . . The history of Psychiatry. British Journal of Psychiatry 2011
56. Duggins, R. Do we hear our patients? A patients page in the BMJ. Rapid Response. British Medical Journal. Published 1st May 2002
57. Beveridge, A. Time to abandon the subjective-objective divide? The Psychiatrist (2002) 26: 101-103
58. McPherson, K. Review: How we got it wrong with breast screening. Published 17 May 2012. BMJ2012;344:e3450
59. Gordon, Peter & Gordon, Sian; Letter: Issues around early diagnosis of Alzheimer’s disease. BMJ 2011;343:d6613
60. Gordon, P. How we risk getting it wrong in cognitive screening too BMJ 2012; 344:e4043 (Published 12 June 2012)
61. Gordon, P. Taking dementia seriously. BMJ 2012;344:e2745 (Published 18 April 2012)
62. Alzheimer’s Disease International. World Alzheimer report 2011: The benefits of early diagnosis and intervention. 2011. www.alz.co.uk/research/WorldAlzheimerReport2011ExecutiveSummary.pdf.
63. Ballenger, J. Blog: To Conquer Confusion. The Alzheimer’s Hockey Stick. 20 Jun 2012. http://conquerconfusion.wordpress.com/2012/06/20/the-alzheimers-hockey-stick-and-the-history-of-late-twentieth-century-biomedicine-2/ (7)
64. Van Rensburg, Al-Salihy, Rubinsztein. Rapid Response reply to Bad Medicine: Dementia. BMJ 2012: 344:e3859.
65. Alzheimer Scotland. Action on dementia
66. Breast screening is beneficial, panel concludes, but women need to know about harms. BMJ2012;345:e7330. Published 30 October 2012
67. A Timely Diagnosis of Deementia can We Do Better? A report for Alzheimer’s Australia. Paper 24. Dr Jill Phillips;Professor Dimity Pond; Ms Susan M Goode. September 2011
68. Does early diagnosis really save lives? BMJ2012;344doi: http://dx.doi.org/10.1136/bmj.e4252( Published 19 June 2012) BMJ2012;344:e4252
69. Bad medicine: dementia. BMJ2012;344doi: http://dx.doi.org/10.1136/bmj.e3859(Published 1 June 2012)BMJ2012;344:e3859
70. Scotland’s National Dementia Strategy. The Scottish Government. October 2010
71. Faces of Dementia. World Alzheimer’s Day 2011. http://www.alz.co.uk/world-alzheimers-day-2011-global-report
72. Early Diagnosis Campaign. Sponsored by Comic Relief and Alzheimer’s Society: Leading the fight against dementia. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1521
73. Fast-track Dementia Test. Daily Mail. PM to announce creation of new hi-tech brain clinicsReferring to CANTABmobile. 4 November 2012
74. CANTABmobile. Cambridge Cognition. Before 24th November this was promoted as “A new touchscreen test for DEMENTIA” sometime between 24 Nov 2012 and 8 Dec 2012 this changed to “A new touchscreen test for Memory Impairment” http://www.cantabmobile.com/
75. NICE Guideline on Dementia. CG42. First published Nov 2006
76. SIGN Guideline 86: Management of patients with dementia. 2006
77. Response from NICE in reply to letter from Filmmaker: Subject: NICE on definitions (Alzheimer’s)
From: NICE Mail [email@example.com]; Sent: 15 February 2012 17:53; Subject: Ref: EH15719
“. . the guideline group, both in discussion and in the guideline, tended to use the terms Alzheimer’s dementia and disease interchangeably.” Communications Manager (Enquiry Handling) National Institute for Health and Clinical Excellence
78. BBC News: Brain function can start declining ‘as early as age 45’ 6 January 2012. http://www.bbc.co.uk/news/health-16425522
79. NHS to Focus on risks of breast screening diagnosis (Scotland on Sunday, 2 Sept 2012)
80. Government announces next steps on Dementia Challenge (Nov 2012). Available at: http://dementia.dh.gov.uk/government-announces-next-steps-on-dementia-challenge/
81. 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
82. Brayne C Making Alzheimer’s and dementia research fit for populations. Lancet 212,; 380, 1441-43.
83. 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
The following have been published since Primum non forgetful was produced:
84. Zeilig, H. Dementia as a cultural metaphor. The Gerontologist. Feb 2013 doi:10.1093/geront/gns203
85. George, D et al Through the amyloid gateway, Lancet Vol 380 December 8, 2012
86. Manthrope, J et al From forgetfulness to dementia. Br J Gen Pract 2013; 63: 30–31
87. George, D.R; Qualls, S.H.; Camp, C.J. and Whitehouse, P.J. Renovating Alzheimer’s: “Constructive” Reflections on the New Clinical and Research Diagnostic Guidelines. The Gerontologist; doi:10.1093/geront/gns096
88. Hughes, J. C. Philosophical issues in dementia. Curr Opin Psychiatry 2013, 26:283–288
89. Would doctors routinely asking older patients about their memory improve dementia outcomes? No. Dr Margaret McCartney. BMJ 2013;346:f1745 (Published 26 March 2013)
90. Would doctors routinely asking older patients about their memory improve dementia outcomes? Yes. Dr J Rasmussen. BMJ 2013;346:f1780 (Published 26 March 2013)