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Preferences regarding disclosure of a diagnosis of dementia: a systematic review

Published online by Cambridge University Press:  16 June 2014

Pim van den Dungen ,
Lisa van Kuijk ,
Harm van Marwijk ,
Johannes van der Wouden ,
Eric Moll van Charante ,
Henriette van der Horst  and
Hein van Hout
Pim van den Dungen*
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Lisa van Kuijk
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Harm van Marwijk
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Johannes van der Wouden
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Eric Moll van Charante
Affiliation:
Department of General Practice, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands
Henriette van der Horst
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Hein van Hout
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Pim van den Dungen, Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands. Phone: +31-20-4448199, Fax +31-20-4448361. Email: p.vandendungen@vumc.nl.
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Abstract

Background:

Studies in memory clinics suggest that the majority of patients would like to know of a diagnosis of dementia. It is less clear what preferences are in the community. Our objective was to review the literature on preferences regarding disclosure of a diagnosis of dementia and to assess key arguments in favor of and against disclosure.

Methods:

Systematic search of empirical studies was performed in Pubmed, Embase, and Psycinfo. We extracted preferences of individuals without cognitive impairment (general population; relatives of dementia patients; and physicians) and preferences of individuals referred to a memory clinic or already diagnosed with dementia. A meta-analysis was done using a random effects model. Our main conclusions are based on studies with a response rate ≥75%.

Results:

We included 23 articles (9.065 respondents). In studies with individuals without cognitive impairment, the pooled percentage in favor of disclosure was 90.7% (95%CI: 83.8%–97.5%). In studies with patients who were referred to a memory clinic or already diagnosed with dementia, the pooled percentage that considered disclosure favorable was 84.8% (95%CI: 75.6%–94.0%). The central arguments in favor of disclosure pertained to autonomy and the possibility to plan one's future. Arguments against disclosure were fear of getting upset and that knowing has no use.

Conclusions:

The vast majority of individuals without and with cognitive impairment prefers to be informed about a diagnosis of dementia for reasons pertaining to autonomy.

Keywords

attitude of health personneldementiadiagnosisdisclosureearly diagnosisinformed consentpatient preferenceprimary health care
Type
Review Article
Information
International Psychogeriatrics , Volume 26 , Issue 10 , October 2014 , pp. 1603 - 1618
Copyright
Copyright © International Psychogeriatric Association 2014 

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