Diagnosis disclosure and advance care planning in Alzheimer disease: opinions of a sample of Italian citizens
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Background and aims
In current Alzheimer disease (AD) research there is growing asymmetry between the modest benefits of the currently available treatments, in contrast to the possibility to diagnose AD early in its natural history. This complex situation brings along a number of important ethical issues about diagnosis disclosure and end-of-life decisions that need to be addressed. The principal aim of the study was to investigate the attitudes towards disclosure of a diagnosis of AD and disposition towards completion of advance care planning, in a sample of Italian citizens.
A convenience sample of 1,111 Italian citizens recruited from a community hospital in Brescia were interviewed using a structured questionnaire with both yes/no and multiple choice format questions about AD.
The majority of the sample (83 %) wanted disclosure for themselves. Women and caregivers were significantly less likely to agree that their hypothetically afflicted relative should be informed of a diagnosis of AD. The majority of the sample (81 %) was in favor of advance care planning completion, most of all younger participants and non-caregivers. Less than a third of the sample (24 %) was aware of the existence a judicially appointed guardian for patients affected by dementia.
The majority of the participants wanted a potential diagnosis of AD to be disclosed to them and to their relatives if they were to be afflicted. The utility of completion of advance care planning and designation of a judicially appointed guardian is frequently endorsed by the sample.
KeywordsDementia Diagnosis disclosure Advance care planning Questionnaire General population
Conflict of interest
The authors have no financial or any other kind of personal conflicts with this paper.
- 1.Alzheimer’s Disease International (2008) The prevalence of dementia worldwide. http://www.alz.co.uk/adi/pdf/prevalence.pdf. Accessed 2013
- 2.McKhann GM, Knopman DS, Chertkow H et al (2011) The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement 7:263–269PubMedCentralPubMedCrossRefGoogle Scholar
- 3.Albert MS, DeKosky ST, Dickson D et al (2011) The diagnosis of mild cognitive impairment due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement 7:270–279PubMedCentralPubMedCrossRefGoogle Scholar
- 4.Sperling RA, Aisen PS, Beckett LA et al (2011) Toward defining the preclinical stages of Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement 7:280–292PubMedCentralPubMedCrossRefGoogle Scholar
- 14.Ouimet MA, Dendukuri N, Dion D, Beizile E, Elie M (2004) Disclosure of Alzheimer’s disease. Senior citizens’ opinions. Can Fam Phys 50:1671–1677Google Scholar
- 27.Izzicupo F, Vanacore N, Galeotti F et al (2008) Parametri per la valutazione della capacità di esprimere consenso al trattamento e strumenti per la loro misurazione. Il Consenso informato al trattamento dei soggetti affetti da demenza; aspetti etici, deontologici e giuridici (edited by Petrini C). Rapporto ISTISAN 33:14–22Google Scholar