Skip to main content
Canadian Family Physician logoLink to Canadian Family Physician
. 2004 Dec;50:1671–1677.

Disclosure of Alzheimer's disease. Senior citizens' opinions.

Marie-Andrée Ouimet 1, Nandini Dendukuri 1, Dominique Dion 1, Eric Beizile 1, Michel Elie 1
PMCID: PMC2214533  PMID: 15648383

Abstract

OBJECTIVE: To determine the proportion of elderly people without dementia who would want disclosure of a diagnosis of Alzheimer's disease (AD), for themselves or for their spouses, and to verify whether the availability of medication would influence their decision. DESIGN: A cross-sectional survey with a semistructured questionnaire completed during face-to-face interviews. SETTING: Medical and surgical outpatient clinics in St Mary's Hospital Center. PARTICIPANTS: 204 subjects 65 years or older with at most mild cognitive impairment. MAIN OUTCOME MEASURES: Percentage of positive responses for disclosure of a diagnosis of AD to self or to spouse, with or without medication. RESULTS: Nearly all (98%) subjects wanted disclosure for themselves. Most (78%) wanted disclosure for their potentially afflicted spouses when medication was said to be unavailable. This proportion increased to 97%, however, if medication was available. CONCLUSION: Most participants requested honesty for themselves. Most wanted disclosure to a potentially affected spouse when medication is said to be available.

Full Text

The Full Text of this article is available as a PDF (228.6 KB).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Bahro M., Silber E., Sunderland T. How do patients with Alzheimer's disease cope with their illness? A clinical experience report. J Am Geriatr Soc. 1995 Jan;43(1):41–46. doi: 10.1111/j.1532-5415.1995.tb06240.x. [DOI] [PubMed] [Google Scholar]
  2. Clafferty R. A., Brown K. W., McCabe E. Under half of psychiatrists tell patients their diagnosis of Alzheimer's disease. BMJ. 1998 Aug 29;317(7158):603–603. doi: 10.1136/bmj.317.7158.603b. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Erde E. L., Nadal E. C., Scholl T. O. On truth telling and the diagnosis of Alzheimer's disease. J Fam Pract. 1988 Apr;26(4):401–406. [PubMed] [Google Scholar]
  4. Erkinjuntti T., Sulkava R., Wikström J., Autio L. Short Portable Mental Status Questionnaire as a screening test for dementia and delirium among the elderly. J Am Geriatr Soc. 1987 May;35(5):412–416. doi: 10.1111/j.1532-5415.1987.tb04662.x. [DOI] [PubMed] [Google Scholar]
  5. Gordon M., Goldstein D. Alzheimer's disease. To tell or not to tell. Can Fam Physician. 2001 Sep;47:1803-6, 1809. [PMC free article] [PubMed] [Google Scholar]
  6. Holroyd S., Snustad D. G., Chalifoux Z. L. Attitudes of older adults' on being told the diagnosis of Alzheimer's disease. J Am Geriatr Soc. 1996 Apr;44(4):400–403. doi: 10.1111/j.1532-5415.1996.tb06409.x. [DOI] [PubMed] [Google Scholar]
  7. Husband H. J. Diagnostic disclosure in dementia: an opportunity for intervention? Int J Geriatr Psychiatry. 2000 Jun;15(6):544–547. doi: 10.1002/1099-1166(200006)15:6<544::aid-gps241>3.0.co;2-8. [DOI] [PubMed] [Google Scholar]
  8. 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 Sep;16(9):879–885. doi: 10.1002/gps.412. [DOI] [PubMed] [Google Scholar]
  9. Johnson H., Bouman W. P., Pinner G. On telling the truth in Alzheimer's disease: a pilot study of current practice and attitudes. Int Psychogeriatr. 2000 Jun;12(2):221–229. doi: 10.1017/s1041610200006347. [DOI] [PubMed] [Google Scholar]
  10. Kirby M., Maguire C. Telling the truth. Br J Gen Pract. 1998 Jun;48(431):1343–1344. [PMC free article] [PubMed] [Google Scholar]
  11. Maguire C. P., Kirby M., Coen R., Coakley D., Lawlor B. A., O'Neill D. Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis. BMJ. 1996 Aug 31;313(7056):529–530. doi: 10.1136/bmj.313.7056.529. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Marzanski M. Would you like to know what is wrong with you? On telling the truth to patients with dementia. J Med Ethics. 2000 Apr;26(2):108–113. doi: 10.1136/jme.26.2.108. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Patterson C. J., Gauthier S., Bergman H., Cohen C. A., Feightner J. W., Feldman H., Hogan D. B. The recognition, assessment and management of dementing disorders: conclusions from the Canadian Consensus Conference on Dementia. CMAJ. 1999 Jun 15;160(12 Suppl):S1–15. [PMC free article] [PubMed] [Google Scholar]
  14. Pfeiffer E. A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. J Am Geriatr Soc. 1975 Oct;23(10):433–441. doi: 10.1111/j.1532-5415.1975.tb00927.x. [DOI] [PubMed] [Google Scholar]
  15. Pinner G. Truth-telling and the diagnosis of dementia. Br J Psychiatry. 2000 Jun;176:514–515. doi: 10.1192/bjp.176.6.514. [DOI] [PubMed] [Google Scholar]
  16. Post S. G., Whitehouse P. J. Fairhill guidelines on ethics of the care of people with Alzheimer's disease: a clinical summary. Center for Biomedical Ethics, Case Western Reserve University and the Alzheimer's Association. J Am Geriatr Soc. 1995 Dec;43(12):1423–1429. doi: 10.1111/j.1532-5415.1995.tb06625.x. [DOI] [PubMed] [Google Scholar]
  17. Rice Karl, Warner Nick. Breaking the bad news: what do psychiatrists tell patients with dementia about their illness? Int J Geriatr Psychiatry. 1994 Jun;9(6):467–471. doi: 10.1002/gps.930090605. [DOI] [PubMed] [Google Scholar]
  18. Rohde K., Peskind E. R., Raskind M. A. Suicide in two patients with Alzheimer's disease. J Am Geriatr Soc. 1995 Feb;43(2):187–189. doi: 10.1111/j.1532-5415.1995.tb06388.x. [DOI] [PubMed] [Google Scholar]
  19. Smith A. P., Beattie B. L. Disclosing a diagnosis of Alzheimer's disease: patient and family experiences. Can J Neurol Sci. 2001 Feb;28 (Suppl 1):S67–S71. doi: 10.1017/s0317167100001220. [DOI] [PubMed] [Google Scholar]
  20. Smyer M. A., Hofland B. F., Jonas E. A. Validity study of the short portable mental status questionnaire for the elderly. J Am Geriatr Soc. 1979 Jun;27(6):263–269. doi: 10.1111/j.1532-5415.1979.tb06128.x. [DOI] [PubMed] [Google Scholar]
  21. Vassilas C. A., Donaldson J. Telling the truth: what do general practitioners say to patients with dementia or terminal cancer? Br J Gen Pract. 1998 Mar;48(428):1081–1082. [PMC free article] [PubMed] [Google Scholar]

Articles from Canadian Family Physician are provided here courtesy of College of Family Physicians of Canada

RESOURCES