Hostname: page-component-8448b6f56d-xtgtn Total loading time: 0 Render date: 2024-04-24T12:24:55.133Z Has data issue: false hasContentIssue false
  • English
  • Français

Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences

Published online by Cambridge University Press:  02 December 2014

André P. Smith  and
B. Lynn Beattie
André P. Smith
Affiliation:
Department of Sociology, McGill University, Montreal QC, Canada
B. Lynn Beattie
Affiliation:
Division of Geriatric Medicine, Department of Medicine, University of British, Columbia, BC, Canada
Rights & Permissions [Opens in a new window]

Abstract

Core share and HTML view are not available for this content. However, as you have access to this content, a full PDF is available via the ‘Save PDF’ action button.
Background:

Informing patients and families about the diagnosis of Alzheimer’s disease (AD) is a complex ethical and practical issue. This qualitative study explores the psychosocial impact of disclosing a diagnosis of AD on patients and family members.

Methods:

This study identified 14 patients and their accompanying family members undergoing a multidisciplinary assessment for dementia at an outpatient clinic for AD and related disorders. Of the group, three patients had probable AD and five had possible AD as per NINCDS-ADRDAcriteria. Six patients were not demented as per DSM IIIR criteria. Disclosure of diagnosis occurred, in a family conference, within six to eight weeks of the assessment. Data collection methods included observation of the assessment and the family conference as well as in-depth home interviews with family members and with each patient whenever feasible. The interviews were transcribed verbatim and coded for recurrent themes.

Results:

A total of 40 individuals across 14 families participated in this study. Only two families chose not to have the patient attend the family conference. The disclosure of a diagnosis of probable AD brought on an experience of relief in three families, marking the end of a lengthy period of confusion about the nature of memory problems. Patients diagnosed with possible AD and their families interpreted how indicative the diagnosis was of the presence of the disease with varying degrees of certainty depending on pre-assessment beliefs about the cause of memory problems. In the group diagnosed as not demented, four patients had complaints of forgetfulness likely related to minor depression. The disclosure of a diagnosis of no dementia did not produce the anticipated relief. Two patients continued to believe their memory problems were caused by the early onset of AD or some other “organic” problem.

Interpretation:

This study reveals that disclosure of the diagnosis of AD to patients and family members is generally beneficial but that there are variations in the understanding of the diagnostic information, particularly in instances where the assessment results are ambiguous.

Type
Research Article
Information
Canadian Journal of Neurological Sciences , Volume 28 , Supplement S1: Canadian Consensus Conference on Dementia , May 2001 , pp. S67 - S71
Copyright
Copyright © The Canadian Journal of Neurological 2001

References

1. Drickamer, MA, Lachs, MS Should patients with Alzheimer’sdisease be told their diagnosis? N Engl J Med 1992; 326:947–951.Google Scholar
2. Post, SG, Whitehouse, PJ. Fairhill guidelines on ethics of the care ofpeople with Alzheimer’s disease: a clinical summary. JAGS 1995; 43:1423–29.Google Scholar
3. Vassilas, CA, Donaldson, J. Telling the truth: What do generalpractitioners say to patients with dementia or terminal cancer? Br J Gen Pract 1998; 48:1081–1082.Google Scholar
4. Clafferty, RA, Brown, KW, McCabe, E. Under half of psychiatriststell their patients of their diagnosis of Alzheimer’s disease. Br Med J 1998; 317: 603.Google Scholar
5. Maguire, CP, Kirby, M, Coen, R, et al. Family members’ attitudestoward telling the patient with Alzheimer’s disease their diagnosis. Br Med J 1996; 313:529–530.Google Scholar
6. Holroyd, S, Snustad, DG, Chalifoux, ZL. Attitudes of older adults onbeing told the diagnosis of Alzheimer’s disease. JAGS 1996;44:400–403.CrossRefGoogle ScholarPubMed
7. Erde, EL, Nadal, EC, Scholl, TO. On truth telling and the diagnosis ofAlzheimer’s disease. J Fam Practice 1988; 26:401–406.Google Scholar
8. Michon, A, Deweer, B, Pillon, B, Agid, Y, Dubois, B. Relation ofanosognosia to frontal lobe dysfunction in Alzheimer’s disease. JNeurol Neurosur Psychiatry 1994; 57:805–809.Google Scholar
9. Post, SG, Folley, JM. Biological marker and truth telling. AlzheimerDis Assoc Disord 1992;6:201–204.Google Scholar
10. McKahnn , G, Drachman, D, Folstein, M, et al. Clinical diagnosis ofAlzheimer’s disease: a report of the NINCDS-ADRDA work group under the auspices of Department of Health and Human Services Task Force on Alzheimer’s Disease. Neurology 1984;34:939–944.CrossRefGoogle Scholar
11. Lerner, AJ, Friedland, RP, Whitehouse, PJ. Uses of biologicalmarkers. Alzheimer Dis Assoc Disord 1993; 6:197–200.Google Scholar
12. Morris, JC, Rubin, EH. Clinical diagnosis and course of Alzheimer’sdisease. Psychiatr Clin North Am 1991; 14:223–236.Google Scholar
13. Tierney , MC, Szalai, JP, Snow, WG, et al. Prediction of probableAlzheimer’s disease in memory-impaired patients: a prospective longitudinal study. Neurology 1996;46: 661–665.Google Scholar
14. Gubrium , JF. Family responsibility and caregiving in the qualitativeanalysis of the Alzheimer’s disease experience. J Marriage Family 1988; 50:197–204.Google Scholar
15. American Psychiatric Association. Diagnostic and statistical manualof mental disorders, 3rd ed. Washington, DC: Am PsychiatricAssoc, 1987.Google Scholar
16. Alzheimer Society of Canada. Tough issues: communicating thediagnosis. Information sheets from the Alzheimer Society. Alzheimer Society of Canada, Toronto, 1997.Google Scholar