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.
This study was undertaken to evaluate (1) what information normal and Alzheimer disease (AD) participants are able to manage; (2) the correlation between the degree of competency and age, education and dementia scores, and the ability of dementia scores to predict incompetence; and (3) the capacity to retain consent-related information. To fulfil these aims, a four-point competency rating scale (1 = incompetent, 2 = marginally competent, 3 = sufficiently competent, and 4 = completely competent) was used in 70 patients (Mini-Mental State Examination [MMSE] score >9; Global Deterioration Scale score <6) and in 40 cognitively normal caregivers. Patients were divided into two subgroups (competency ratings 1 and 2 versus 3 and 4) to calculate positive and negative predictive values of MMSE and Alzheimer Disease Assessment Scale-cognitive (ADAScog) for absent/marginal competence. Main results were as follows: (1) 32.9% of AD patients were "incompetent" (no caregivers), 37.1% were "marginally competent" (20% caregivers), 18.6% were "sufficiently competent" (50% caregivers), and 11.4% were "completely competent" (30% caregiverss). (2) Competency ratings and age did not correlate in AD, whereas a negative correlation was significant in caregivers; competency ratings positively correlated to education in caregivers. (3) ADAScog and MMSE were the tests most significantly correlated to competency; MMSE score below 18 had a positive predictive value of 95% and a negative predictive value of 63.3%. The fact that 95% of patients with MMSE scores below 18 are incompetent or marginally competent points to an urgent need for ethical procedures capable of creating a balance between difficulties in obtaining valid consent and a patient's right to benefit from advances in clinical research.
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