Diagnostic disclosure in Alzheimer's disease: A review

Raicher, Irina; Caramelli, Paulo

doi:10.1590/S1980-57642009DN20400006

Abstract

Although growing, the literature on research into attitudes of general and specialized physicians towards disclosing the diagnosis of dementia and Alzheimer's disease (AD), or the current practice on AD disclosure, remains limited. Moreover, information is also scarce on what caregivers, or indeed patients themselves, wish to know with regard to their diagnosis. The goal of the present article was to present a review of the current available literature on the topic of truth telling in dementia, especially in AD. The studies discussed in this review were mainly conducted in Europe, particularly in the United Kingdom, as well as the United States. Disclosure of AD diagnosis is not a common practice among physicians. In the clinical context, the discussion on diagnosis disclosure can be valuable for improving the care of AD patients and their families.

Key words:
dementia; Alzheimer's disease; truth disclosure; diagnosis disclosure; bioethics.

Resumo

O conhecimento científico ainda é limitado, embora crescente, a respeito das atitudes de médicos generalistas e especialistas sobre a revelação do diagnóstico de demência e da doença de Alzheimer (DA), ou ainda em relação à prática atual na revelação diagnóstica da DA. As informações também são escassas sobre o que cuidadores e os próprios pacientes querem saber sobre o seu diagnóstico. O objetivo deste artigo é apresentar uma revisão da literatura disponível atualmente sobre revelação diagnóstica em demência, especialmente na DA. Os estudos discutidos nesta revisão foram feitos principalmente na Europa, a maioria no Reino Unido, e nos Estados Unidos. A revelação diagnóstica da DA não é uma prática comum entre os médicos. No contexto clinico, esta discussão pode ser útil para melhorar o tratamento dos pacientes com DA e a atenção a seus familiares.

Palavras-chave:
demência; doença de Alzheimer; revelação da verdade; revelação diagnóstica; bioética.

Texto completo disponível apenas em PDF.

Full text available only in PDF format.

References

¹
Guttman R, Seleski M, editors. Diagnosis, Management and Treatment of Dementia: A Practice Guide for Primary Care Physicians. Chicago, IL: American Medical Association;1999.
²
Herrera E Jr., Caramelli P, Silveira AS, Nitrini R. Epidemiologic survey of dementia in a community-dwelling Brazilian population. Alzheimer Dis Assoc Disord 2002;16:103-108.
³
Nitrini R, Caramelli P, Herrera E Jr. et al. Incidence of dementia in a community-dwelling Brazilian population. Alzheimer Dis Assoc Disord 2004;18:241-246.
⁴
Ferri CP, Prince M, Brayne C, et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005;366:2112-2117.
⁵
Katzman R. Alzheimer's disease is a degenerative disorder. Neurobiol Aging 1989;10:581-582.
⁶
Nitrini R, Caramelli P, Herrera E Jr. et al. Mortality from dementia in a community-dwelling Brazilian population. Int J Geriatr Psychiatry 2005;20:247-253.
⁷
Chaves MLF. Diagnóstico diferencial das doenças demenciantes. In: Forlenza OV, Caramelli P. Neuropsiquiatria geriátrica. São Paulo: Atheneu; 2000:81-104.
⁸
González-Salvador MT, Arango C, Lyketsos CG, Barba AC. The stress and psychological morbidity of the Alzheimer patient caregiver. Int J Geriatr Psychiatry 1999;14:701-710.
⁹
Connell CM, Janevic MR, Gallant MP. The costs of caring: impact of dementia on family caregivers. J Geriatr Psychiatry Neurol 2001;14:179-187.
¹⁰
Aguglia E, Onor ML, Trevisiol M, et al. Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy. Am J Alzheimers Dis Other Demen 2004;19:248-252.
¹¹
Mahoney R, Regan C, Katona C, Livingston G. Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. Am J Geriatr Psychiatry 2005;13:795-801.
¹²
Johnson H, Bouman WP, Pinner G. On telling the truth in Alzheimer's disease: A pilot study of current practice and attitudes. Int Psychogeriatr 2000;12:221-229.
¹³
Gilliard J, Gwilliam C. Sharing the diagnosis: a survey of memory disorders clinics, their policies on informing people with dementia and their families, and the support they offer. Int J Geriatr Psychiatry 1996;11:1001-1003.
¹⁴
Rice K, Warner N. Breaking the bad news: What do psychiatrists tell patients with dementia about their illness? Int J Geriatr Psychiatry 1994;9:467-471.
¹⁵
Rice K, Warner N, Tye T, Bayer A. Geriatricians' and psychiatrists' practice differs. Br Med J 1997;314:376.
¹⁶
Clafferty RA, Brown KW, McCabe E. Under half of psychiatrists tell patients their diagnosis of Alzheimer's disease. Br Med J 1998;317:603.
¹⁷
Vassilas CA, Donaldson J. Telling the truth: What do general practitioners say to patients with dementia or terminal cancer? Br J Gen Pract 1998;48:1081-1082.
¹⁸
Cantegreil-Kallen I, Turbelin C, Olava E, et al. Disclosure of diagnosis of Alzheimer's disease in French general practice. Am J Alzheimers Dis Other Demen 2005;20:228-232.
¹⁹
Raicher I, Shimizu MM, Takahashi DY, Nitrini R, Caramelli P. Alzheimer's disease diagnosis disclosure in Brazil: a survey of specialized physicians' current practice and attitudes. Int Psychogeriatr 2008;20:471-481.
²⁰
Maguire CP, Kirby M, Coen R, Coakley D, Lawlor BA, O'Neill D. Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis. Br Med J 1996;313:529-530.
²¹
Barnes RC. Telling the diagnosis to patients with Alzheimer's disease. Br Med J 1997;314:375-376.
²²
Holroyd S, Turnbull Q, Wolf AM. What are patients and their families told about the diagnosis of dementia? Results of a family survey. Int J Geriatr Psychiatry 2002;17:218-221.
²³
Pucci E, Belardinelli N, Borsetti G, Giuliani G. Relatives' attitudes towards informing patients about the diagnosis of Alzheimer's disease. J Med Ethics 2003;29:51-54.
²⁴
Lin KN, Liao Y C, Wang PN, Liu HC. Family members favor disclosing the diagnosis of Alzheimer's disease. Int Psychogeriatr 2005;17:679-688.
²⁵
Vilela LP, Caramelli P. Alzheimer's disease as viewed by relatives of patients at public and private clinics. Rev Assoc Med Bras 2006;52:148-152.
²⁶
Erde EL, Nadal EC, Scholl T. O. On truth telling and the diagnosis of Alzheimer`s disease. J Fam Pract 1988;26:401-406.
²⁷
Holroyd S, Snustad DG, Chalifoux ZL. Attitudes of older adults' on being told the diagnosis of Alzheimer's disease. J Am Geriatr Soc 1996;44:400-403.
²⁸
Jha A, Tabet N, Orrell M. To tell or not to tell - comparison of older patients' reaction to their diagnosis of dementia and depression. Int J Geriatr Psychiatry 2001;16:879-885.
²⁹
Turnbull Q, Wolf AM, Holroyd S. Attitudes of elderly subjects toward "truth telling" for the diagnosis of Alzheimer's disease. J Geriatr Psychiatry Neurol 2003;16:90-93.
³⁰
Keating DT, Nayeem K, Gilmartin JJ, O'Keeffe ST. Advance directives for truth disclosure. Chest 2005;128:1037-1039.
³¹
Elson P. Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer's disease? Int J Geriatr Psychiatry 2006;21:419-425.
³²
Mager WM, Andrykowski MA. Communication in the cancer 'bad news' consultation:patient perceptions and psychological adjustment. Psychooncology 2002;11:35-46.
³³
Omne-Ponten M, Holmber L, Sjoden PO. Psychological adjustment among women with breast cancer stages I and II:six year follow-up of consecutive patients. J Clin Oncol 1994;12:1778-1782.
³⁴
Ptacek JT, Ellison NM. Health care providers' perspectives on breaking bad news to patients. Crit Care Nurs Q 2000;23: 51-59.

Publication Dates

Publication in this collection
Oct-Dec 2008

History

Received
15 Sept 2008
Accepted
28 Oct 2008

This is an open-access article distributed under the terms of the Creative Commons Attribution License

[1] ¹
Guttman R, Seleski M, editors. Diagnosis, Management and Treatment of Dementia: A Practice Guide for Primary Care Physicians. Chicago, IL: American Medical Association;1999.

[2] ²
Herrera E Jr., Caramelli P, Silveira AS, Nitrini R. Epidemiologic survey of dementia in a community-dwelling Brazilian population. Alzheimer Dis Assoc Disord 2002;16:103-108.

[3] ³
Nitrini R, Caramelli P, Herrera E Jr. et al. Incidence of dementia in a community-dwelling Brazilian population. Alzheimer Dis Assoc Disord 2004;18:241-246.

[4] ⁴
Ferri CP, Prince M, Brayne C, et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005;366:2112-2117.

[5] ⁵
Katzman R. Alzheimer's disease is a degenerative disorder. Neurobiol Aging 1989;10:581-582.

[6] ⁶
Nitrini R, Caramelli P, Herrera E Jr. et al. Mortality from dementia in a community-dwelling Brazilian population. Int J Geriatr Psychiatry 2005;20:247-253.

[7] ⁷
Chaves MLF. Diagnóstico diferencial das doenças demenciantes. In: Forlenza OV, Caramelli P. Neuropsiquiatria geriátrica. São Paulo: Atheneu; 2000:81-104.

[8] ⁸
González-Salvador MT, Arango C, Lyketsos CG, Barba AC. The stress and psychological morbidity of the Alzheimer patient caregiver. Int J Geriatr Psychiatry 1999;14:701-710.

[9] ⁹
Connell CM, Janevic MR, Gallant MP. The costs of caring: impact of dementia on family caregivers. J Geriatr Psychiatry Neurol 2001;14:179-187.

[10] ¹⁰
Aguglia E, Onor ML, Trevisiol M, et al. Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy. Am J Alzheimers Dis Other Demen 2004;19:248-252.

[11] ¹¹
Mahoney R, Regan C, Katona C, Livingston G. Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. Am J Geriatr Psychiatry 2005;13:795-801.

[12] ¹²
Johnson H, Bouman WP, Pinner G. On telling the truth in Alzheimer's disease: A pilot study of current practice and attitudes. Int Psychogeriatr 2000;12:221-229.

[13] ¹³
Gilliard J, Gwilliam C. Sharing the diagnosis: a survey of memory disorders clinics, their policies on informing people with dementia and their families, and the support they offer. Int J Geriatr Psychiatry 1996;11:1001-1003.

[14] ¹⁴
Rice K, Warner N. Breaking the bad news: What do psychiatrists tell patients with dementia about their illness? Int J Geriatr Psychiatry 1994;9:467-471.

[15] ¹⁵
Rice K, Warner N, Tye T, Bayer A. Geriatricians' and psychiatrists' practice differs. Br Med J 1997;314:376.

[16] ¹⁶
Clafferty RA, Brown KW, McCabe E. Under half of psychiatrists tell patients their diagnosis of Alzheimer's disease. Br Med J 1998;317:603.

[17] ¹⁷
Vassilas CA, Donaldson J. Telling the truth: What do general practitioners say to patients with dementia or terminal cancer? Br J Gen Pract 1998;48:1081-1082.

[18] ¹⁸
Cantegreil-Kallen I, Turbelin C, Olava E, et al. Disclosure of diagnosis of Alzheimer's disease in French general practice. Am J Alzheimers Dis Other Demen 2005;20:228-232.

[19] ¹⁹
Raicher I, Shimizu MM, Takahashi DY, Nitrini R, Caramelli P. Alzheimer's disease diagnosis disclosure in Brazil: a survey of specialized physicians' current practice and attitudes. Int Psychogeriatr 2008;20:471-481.

[20] ²⁰
Maguire CP, Kirby M, Coen R, Coakley D, Lawlor BA, O'Neill D. Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis. Br Med J 1996;313:529-530.

[21] ²¹
Barnes RC. Telling the diagnosis to patients with Alzheimer's disease. Br Med J 1997;314:375-376.

[22] ²²
Holroyd S, Turnbull Q, Wolf AM. What are patients and their families told about the diagnosis of dementia? Results of a family survey. Int J Geriatr Psychiatry 2002;17:218-221.

[23] ²³
Pucci E, Belardinelli N, Borsetti G, Giuliani G. Relatives' attitudes towards informing patients about the diagnosis of Alzheimer's disease. J Med Ethics 2003;29:51-54.

[24] ²⁴
Lin KN, Liao Y C, Wang PN, Liu HC. Family members favor disclosing the diagnosis of Alzheimer's disease. Int Psychogeriatr 2005;17:679-688.

[25] ²⁵
Vilela LP, Caramelli P. Alzheimer's disease as viewed by relatives of patients at public and private clinics. Rev Assoc Med Bras 2006;52:148-152.

[26] ²⁶
Erde EL, Nadal EC, Scholl T. O. On truth telling and the diagnosis of Alzheimer`s disease. J Fam Pract 1988;26:401-406.

[27] ²⁷
Holroyd S, Snustad DG, Chalifoux ZL. Attitudes of older adults' on being told the diagnosis of Alzheimer's disease. J Am Geriatr Soc 1996;44:400-403.

[28] ²⁸
Jha A, Tabet N, Orrell M. To tell or not to tell - comparison of older patients' reaction to their diagnosis of dementia and depression. Int J Geriatr Psychiatry 2001;16:879-885.

[29] ²⁹
Turnbull Q, Wolf AM, Holroyd S. Attitudes of elderly subjects toward "truth telling" for the diagnosis of Alzheimer's disease. J Geriatr Psychiatry Neurol 2003;16:90-93.

[30] ³⁰
Keating DT, Nayeem K, Gilmartin JJ, O'Keeffe ST. Advance directives for truth disclosure. Chest 2005;128:1037-1039.

[31] ³¹
Elson P. Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer's disease? Int J Geriatr Psychiatry 2006;21:419-425.

[32] ³²
Mager WM, Andrykowski MA. Communication in the cancer 'bad news' consultation:patient perceptions and psychological adjustment. Psychooncology 2002;11:35-46.

[33] ³³
Omne-Ponten M, Holmber L, Sjoden PO. Psychological adjustment among women with breast cancer stages I and II:six year follow-up of consecutive patients. J Clin Oncol 1994;12:1778-1782.

[34] ³⁴
Ptacek JT, Ellison NM. Health care providers' perspectives on breaking bad news to patients. Crit Care Nurs Q 2000;23: 51-59.

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