Objective: The problem of truth-telling in Alzheimer's disease has become an increasingly important issue since it is not uncommon that patients visit a memory clinic for treatment even at the very early stage of dementia. It is of importance for early stage patients to be informed about their illness and its implications, specifically when they determine treatment options. However, it is equally important, on the other hand, that informing some patients of their illness could be harmful. Truth-telling is a socially and culturally relevant matter, and it is natural that individuals in different societies may have different opinions.
It is known that Japanese culture has a unique tendency toward truth-telling for cancer patients. Japanese physicians tend to give patients optimistic accounts of their prognosis while they are inclined to give the families pessimistic accounts (Akabayashi et al., 1999). Although truth-telling practice in cancer care has become quite common in Japan (Uchitomi et al., 1997), disclosure of diagnosis for Alzheimer patients has rarely been discussed.
Design: It is hypothesized that family members' attitudes depend on individual community and culture. A questionnaire was deivised and given to compare caregivers' attitudes towards telling Alzheimer's patients their diagnosis in two distinct parts of Japan, i.e., Tokyo Metropolitan and Okinawa prefecture. The latter consists of far south islands and belongs to a rural area. Also, Okinawa is famous for its longest life span in Japan.
Materials and Methods: Forty-six caregivers of patients with very mild to moderate Alzheimer's disease (CDR 0.5 to 2.0) were included in the study. Twenty-eight of them lived in Tokyo and the residual subjects lived in Okinawa. A questionnaire concerning truth-telling was given to each caregiver together with Zarit's Caregiver Burden Scale (Zarit et al., 1980), Self-Rating Depression Scale, Disability Scale, and Stress/Social Support Scale.
Results: 93% of the caregivers in Tokyo wanted to be told of the diagnosis if they were developing the illness. However, 46% of the same caregivers expressed a wish that their relative should not be told. A similar tendency was observed for the caregivers in Okinawa, although in a more conservative fashion. Less number of the Okinawan caregivers wished themselves as well as their relative to be informed of the diagnosis as compared to the caregivers in Tokyo. As for caregivers in Tokyo, those who wish their relative to be informed felt more burden of caregiving, more likely to be depressed and tended to be in good relation with the patients.
Conclusion: Different attitudes toward truth-telling of dementia were noted between caregivers in Tokyo and Okinawa. The caregivers in Okinawa appeared more reluctant to disclose diagnostic information to a patient suffering from dementia. Caregivers' view on this matter related with their stress, mental state as well as sociocultural backgrounds.
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