Diagnosis disclosure and advance care planning in Alzheimer disease: opinions of a sample of Italian citizens

Abstract

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.