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Disclosing the diagnosis of alzheimer’s disease: clinical and ethico-legal aspects
Journal Title: RICERCHE DI PSICOLOGIA  
Author/s: Stefano Zago, Rita Pezzati, Laura Carelli, Barbara Poletti 
Year:  2012 Issue: 2-3 Language: Italian 
Pages:  23 Pg. 501-523 FullText PDF:  284 KB
DOI:  10.3280/RIP2012-002023
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The disclosure of an unfavourable diagnosis, such as dementia, represents an extremely delicate moment in clinical practice. The principle of the patient’s right to know the medical facts in full and likely therapy and prognosis are juxtaposed with the coexisting need to avoid creating further suffering to the patient. In dementia, and in particular in Alzheimer’s disease, as well as care, the situation is complicated by the fact that the patient’s independence and awareness is limited due to cognitive and behavioural impairment, which determine a reduction in the ability of the patient to make decisions. What, how, when and how much disclosure is more complicated in AD then in other pathologies with unfavourable prognosis. There is no shortage of international and Italian publications which develop consolidated guidelines taking diagnostic, therapeutic, ethical-deontological and medico-legal aspects, connected to the disclosure of dementia, into account.
Keywords: Disclosing diagnosis, Alzheimer’s disease, family members, caregivers

  1. Alzheimer Europe - www.alzheimer-europe.org; dev.alzheimereurope. org/Alzheimer-Europe/Our-work/Completed-AE-projects/Optimization- of-the-diagnosis-of-Alzheimer-s-disease-and-related-disorders-OPDAL.
  2. Associazione Italiana Psicogeriatria. Documento: La comunicazione della diagnosi di demenza. Psicogeriatria, 3, 7-13
  3. Baile, W.F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A., & Kudelka, A.P. (2000). SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist, 5(4), 302-11
  4. Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C., & Bond, J. (2004). Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry, 19, 151-169.
  5. Barrett, A.M., & Keller, M. (2006). Short-term effect of dementia disclosure: how patients and families describe the diagnosis.Journal of the American Geriatrics Society, 54(12), 1969-1970.
  6. Blanchard, F., Novella, J.L., Quignard, E., Morrone, I., Debart, A., Courtagne, B., & Drame, M. (2009). L’annonce du diagnostic de la maladie d’Alzheimer, qulques aspects ethiques. Gérontologie et societé, 1(128-129),163-175.
  7. Brewin, T.B. (1991). Three ways of giving bad news. The Lancet, 337, 1207- 1209.
  8. Campbell, K.H., Stocking, C.B., Hougham, G.W., Whitehouse, P.J., Danner, D. D., & Sachs, G. (2008). Dementia, diagnostic disclosure, and self-reported health status. Journal of the American Geriatrics Society, 56(2), 296-300.
  9. Carpenter, B.D., & Dave, J. (2004). Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. The Gerontologist, 44, 149-158.
  10. Carpenter, B.D., Xiong, C., Porensky, E.K., Lee, M.M., Brown, P.J., Coats, M., Johnson, D., & Morris, J.C. (2008). Reaction to a dementia diagnosis in individuals with Alzheimer’s disease and mild cognitive impairment. Journal of the American Geriatrics Society, 56, 405-412.
  11. Clafferty, R.A., Brown, K.W., & McCabe, F. (1998). Under half of psychiatrists tell patients their diagnosis of Alzheimer’s disease. British Medical Journal, 29, 603
  12. Cornett, P.F., & Hall, J.R. (2008). Issue in disclosing a diagnosis of dementia. Archives of Clinical Neuropsychology, 23, 251-256
  13. Defanti, C.A., Martina, A., & Sacco, L. (2009). La valutazione della capacità di agire nei pazienti con demenza. In A. Bianchi, G. Gullotta, & G. Sartori (Eds.), Manuale di Neuroscienze Forensi. Milano: Giuffrè Editore
  14. Dubois, B., Feldman, H.H., Jacova, C., Dekosky, S.T., Barberger-Gateau, P., Cummings, J. L., Delaconte, A., Galaska, D., Gauthier, S., et al. (2007). Research criteria for the diagnosis of Alzheimer’s disease: revising the NINCDSADRDA criteria. The Lancet Neurology, 6, 734-746
  15. Dubois, B., Feldman, H. H., Jacova, C., Cummings, J. L., Dekosky, S. T., Barberger- Gateau, P., Delacourte, A., Frisoni, G., Fox, N.C., et al. (2010). Revising the definition of Alzheimer’s disease: a new lexicon. The Lancet Neurology, 9, 1118-1127.
  16. Erten-Lyons, D., Woltjer, R.L., Dodge, H., Nixon, R., Vorobik, R., Calvert, J.F., Leahy, M., Montine, T., & Kaye, J. (2009). Factors associated with resistance to dementia despite high Alzheimer disease pathology. Neurology, 72, 354- 360.
  17. Fallowfield, L.J. (1993). Giving sad and bad news. Lancet, 20, 341, 476-478
  18. Fallowfield, L.J., & Jenkins, V. (2004). Communicating sad, bad and difficult news in medicine. Lancet, 363, 312-19.
  19. Fisk, J.D., Beattie, B.L., Donnelly, M., Byszewski, A., & Frank, J. (2007). Disclousure of the diagnosis of dementia. Alzeimer’s & Dementia, 3, 404-410
  20. Foy, R., Bamford, C., Francis, J.J., Johnston, M., Lecouturier, J., Eccles, M., Steen, N., & Grimshaw, J. (2007). Which factors explain variation in intention to disclose a diagnosis of dementia? A theory-based survey of mental health professionals. Implementation Science, 2(31). [http://www.implementationscience. com/content/2/1/31].
  21. Frisoni, G.B. (2005). Comunicare la diagnosi di malattia di Alzheimer. Alzheimer Italia, 8, 4-5.
  22. Galluzzi, S., Geroldi, C., Ghidoni, R., Paghera, B., Amicucci, G., Bonetti, M., Zanetti, O., Cotelli, M., Gennarelli, M., & Frisoni, G.B. (2010). The new Alzheimer’s criteria in a naturalistic series of patients with mild cognitive impairment. Journal of Neurology, 257, 2004-2014
  23. Gauvreau, D., & Gendron, M. (1996). Domande e risposte sulla malattia di Alzheimer. Milano: Pythagora Press
  24. Gely-Nargeot, M.C., Derosné, C., & Selmès, J. (2003). Enquête européenne sur l’établissement et la revelation du diagnostic de la Maladie d’Alzheimer. Etude réalisée a partir du recueil de l’opinion des aidants familiaux. Psychologie & Neuropsychologie du vieillissement, 1, 45-55.
  25. Holt, G.R. (2011). Timely Diagnosis and Disclosure of Alzheimer Disease Gives Patients Opportunities to Make Choices. Southern Medical Journal, 104(12), 779-80
  26. Izzicupo, F., Gainotti, S., Massari, A., Giusti, F., Galeotti, T., Di Fiandra, N., Vanacore, N., Raschetti, R., & Gruppo di lavoro GRAPES. (2011). Comunicazione della diagnosi di demenza: un’indagine condotta nei principali centri clinici italiani. Rapporti Istisan, 11-38.
  27. Kaduszkiewicz, H., Bachmann, C., & van den Bussche, H. (2008). Telling "the truth" in dementia. Do attitude and approach of general practitioners and specialists differ? Patient Education and Counseling, 70, 220-226
  28. Karnieli-Miller, O., Werner, P., Aharon-Peretz, J., & Eidelman, S. (2007). Dilemmas in the (un)veiling of the diagnosis of Alzheimer’s diesease: Walking an ethical and professional tight rope. Patient Educ Couns, 67, 307-314
  29. Laakkonen, M.L., Raivio, M.M., Eloniemi-Sulkava, U., Tilvis, R.S., & Pitkala, K.H. (2008). How do elderly spouse caregivers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? Journal of Medical Ethics, 34, 427–430.
  30. Lecouturier, J., Bamford, C., Hughes, J., Francis, J., Foy, R., Johnston, M., & Eccles, M. (2008). Appropriate disclousure of a diagnosis of dementia: identifying the kay behaviours of “best practice”. BMC Health Services Research, 8, 95, 1-10.
  31. Le Dastumer, B., & Mure-Petitjean, C. (2011). Pourquoi et comment donner une place à l’annonce diagnostique au sein d’une consultation mémoire? EREMA (Espace de Réflexion Ethique sur la Maladie d’Alzheimer) www.espace-ethique- alzheimer.org.
  32. Maguire, C.P., Kirby, M., Coen, R., Coakley, D., Lawlor, B.A., & O’Neill, D. (1996). Family members’ attitudes toward telling the patient with Alzheimer’s disease their diagnosis. British Medical Journal, 313, 529-530
  33. Marzanski, M. (2000). On telling the truth to patients with dementia. Western Journal of Medicine, 173, 5.
  34. Mattsson, N., Brax, D., & Zetterberg, H. (2010). Review Article. To Know or Not to Know: Ethical Issues Related to Early Diagnosis of Alzheimer’s Disease. International Journal of Alzheimer’s Disease, article ID 841941, 4 pages
  35. Meitar, D., Karnieli-Miller, O., & Eidelman, S. (2009). The impact of senior medical students’ personal difficulties on their communication patterns in breaking bad news. Academic Medicine, 84, 1582-94
  36. Novack, D.H., Plumer, R., Smith, R.L., Ochitill, H., Morrow, G.R., & Bennett, J.M. (1979). Changes in physicians’ attitudes toward telling the cancer patient. Journal of American Medical Association, 241, 897-900
  37. Oksengard, A.R., Cavallin, L., Axelsson, R., Andersson, C., Nägga, K., Winbland, B., Eriksdotter-Jönhagen, M., & Wahlund, L.O. (2010). Lack of accuracy for the proposed ‘Dubois criteria’ in Alzheimer’s disease: a validation study from the Swedish brain power initiative. Dementia and Geriatric Cognitive Disorders, 30, 374-380
  38. Perneczky, R., Wagenpfeil, S., Lunetta, K.L., Cupples, A., Green, R.C., DeCarli, C., Farrer, L.A., & Kurz, A. (2009). Education attenuates the effect of medial temporal lobe atrophy on cognitive function in Alzheimer’s disease: the MIRAGE study. Journal of Alzheimer’s Disease, 17, 855-862.
  39. Phillips, J., Pond, C.D., Paterson, N.E., Howell, C., Shell, A., Stocks, N.P., et al. (2012). Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice. British Journal of General Practice, 62(601).
  40. Pinner, G., & Bouman, W.P. (2002). To tell or not to tell: on disclosing the diagnosis of dementia. International Psychogeriatrics, 14, 127-137.
  41. Pinner, G., & Bouman, W.P. (2003). Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. International Psychogeriatrics, 15, 279-288.
  42. Porteri, C., Galluzzi, S., Geroldi, C., & Frisoni, G.B. (2010). Diagnosis disclosure of prodromal Alzheimer disease-ethical analysis of two cases. Canadian Journal of Neurological Sciences, 37, 67-75
  43. Pratt, R., & Wilkinson, H. (2001). ‘Tell me the truth’: the effect of being told the diagnosis of dementia from the perspective of the person with dementia. Mental Health Foundation, London, 1-39. In E. Steeman, B. Dierckx de Casterlé, J. Godderis, & M. Grypdonck (2006), Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722-738
  44. Prvulovic, D., & Hampel, H. (2011). Ethical considerations of biomarkers use in neurodegenerative diseases-A case study of Alzheimer’s disease. Progress in Neurobiology, 95(4), 517-519
  45. Pucci, E., Belardinelli, N., Signorino, M., et al. (1998). Italian relative’s attitudes toward informing patients with Alzheimer’s disease about the diagnosis. British Medical Journal, 316-323
  46. Robinson, L., Gemski, A., Abley, C., Bond, J., Keady, J., Campbell, S., Samsi, K., & Manthorpe, J. (2011). The transition to dementia – individual and family experiences of receiving a diagnosis: a review. International Psychogeriatrics, 23, 1026-1043
  47. Rohde, K., Peskind, E.R., & Raskind, M.A. (1995). Suicide in two patients with Alzheimer’s disease. Journal of the American Geriatrics Society, 43(2), 187- 9.
  48. Stracciari, A., & Cretella, L. (2012). Aspetti etici, deontologici e medico-legali nella demenza. Comunicazioni di Asssomensana
  49. Tarek, M.E., Segers, K., & Van Nechel, C. (2009). What Belgian neurologists and neuropsychiatrists tell their patients with Alzheimer disease and why a national survey. Alzheimer Disease and Associated Disorders, 23(1), 33-7.
  50. Werner, P., Karnieli-Miller, O., Adler, A., & Eidelman, S. (2010). How Neurologists Tell Their Patients With Alzheimer Disease About Their Diagnosis: Another Side to Tarek et al’s Study. Alzheimer Disease and Associated Disorders, 24(2), 115-7.
  51. Werner, P., Karnieli-Miller, O., & Eldelman, S. (2012). Current knowledge and future directions about the disclosure of dementia: A systematic review of the first decade of the 21st century. Alzheimer's & Dementia., 10.1016/j.jalz.2012.02.006DOI: 10.1016/j.jalz.2012.02.006
  52. Whitehouse, P., Frisoni, G.B., & Post, S. (2004). Breaking the diagnosis of dementia. The Lancet Neurology, 3, 124-128
  53. Zaleta, A.K., & Carpenter, B.D. (2010). Patient-centered communication during the disclosure of a dementia diagnosis. American Journal of Alzheimers Disease and Other Dementias, 25, 513-520.

Stefano Zago, Rita Pezzati, Laura Carelli, Barbara Poletti, Disclosing the diagnosis of alzheimer’s disease: clinical and ethico-legal aspects in "RICERCHE DI PSICOLOGIA " 2-3/2012, pp. 501-523, DOI:10.3280/RIP2012-002023

   

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