title: Preferences regarding disclosure of a diagnosis of dementia: a systematic review.
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.
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands.
authors.forename: Pim
authors.initials: P
authors.lastname: van den Dungen
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands.
authors.forename: Lisa
authors.initials: L
authors.lastname: van Kuijk
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands.
authors.forename: Harm
authors.initials: H
authors.lastname: van Marwijk
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands.
authors.forename: Johannes
authors.initials: J
authors.lastname: van der Wouden
authors.affiliation: Department of General Practice, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: Eric
authors.initials: E
authors.lastname: Moll van Charante
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands.
authors.forename: Henriette
authors.initials: H
authors.lastname: van der Horst
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands.
authors.forename: Hein
authors.initials: H
authors.lastname: van Hout
mesh_terms: D003704:Dementia / Q000175:diagnosis* / Q000523:psychology; D006801:Humans; D057240:Patient Preference / Q000523:psychology; D026684:Personal Autonomy; D014342:Truth Disclosure