Relatives' attitudes towards informing patients about the diagnosis of Alzheimer’s disease

Abstract

Objectives: To evaluate relatives' attitudes towards informing patients with Alzheimer's disease (AD) about their diagnosis. Setting: A university hospital in Italy. Methods: The closest relatives of each of 71 subjects diagnosed for the first time as having AD were interviewed, using a semistructured questionnaire. Spontaneous requests by relatives not to communicate issues concerning the diagnosis were also recorded. Results: Forty three (60.6%) relatives spontaneously requested that patients not be fully informed. After being interviewed, nobody thought that the patient should be given all the information. Justifications were related to the fear of the onset or worsening of depressive symptoms in the patient. Conclusions: In Italy relatives' opposition to informing AD patients appears to be common. Knowledge of the relatives' attitudes may be useful for clinicians but disclosure of diagnosis should be based on the clinical evaluation of the patient and on a prudent evaluation of the relationship between the patient and her/his relative caregiver.

Disclosure of the diagnosis of Alzheimer's disease: caregivers' opinions in a Brazilian sample

“…Nevertheless, most of the people interviewed in this study would want their own diagnosis revealed to them should they suffer from AD. This somewhat conflicting aspect, had already been noted in studies carried out in Italy 17 and Ireland…”

“…Forty three (60.6%) relatives spontaneously declared their wish for patients not to be informed of the diagnosis. Following the interview, all interviewees felt the patient should not be told of the diagnosis, fearing bringing on or worsening depressive symptoms for the patients 17 . This result is similar to that found in Ireland by Conor et al, showing that this fear of the emotional impact on the patient following disease diagnosis disclosure is prevalent among patient relatives 14 .…”

Reaching the ‘hard to reach’: strategies to recruit black and minority ethnic service users with rare long-term neurological conditions

“…This was done because some people may have been unaware of their own diagnosis. A study in Italy reported how a number of carers asked for their relatives not to be fully informed of their Alzheimer's (Pucci et al, 2003). Although there is no evidence to suggest that diagnoses of these neurological conditions are concealed from those with it, there may have been cases where people knew their condition by a different name, but may have recognised the symptoms.…”

Attitude Towards Alzheimer’s Disease Among Undergraduate Students of University of the West Indies, Trinidad and Tobago

“…The finding of the latter study is congruent with that by Puce and colleagues involving 71 closest relatives of patients diagnosed with Alzheimer's disease for the first time who were interviewed. They reported that 60.6% were not in favour of their loved one being fully informed that they had Alzheimer's disease [21]. The justifications of this position by relatives include their own emotional difficulty in accepting and coping with the psychological reaction of their loved one and the risk of onset and possible worsening symptoms of depression in the patient [21].…”