Attitudes of older adults' on being told the diagnosis of Alzheimer's disease

OBJECTIVE: Controversy exists as to whether Alzheimer's disease (AD) patients should be told their diagnosis, yet no research has been done examining older patients' attitudes on this topic. This study examines patient's attitudes toward this topic. DESIGN: A prospective, community-based study. Participants read vignettes of two patients, one with AD and one with terminal cancer, and then answered questions regarding their attitudes toward these illnesses. SETTING: A community-based retirement community in Charlottesville, Virginia. PARTICIPANTS: One hundred fifty-six community-dwelling older persons (mean age 79.7 +/- 6.9 years). MEASUREMENTS: A structured questionnaire disclosed demographic data (age, sex, race, religion, marital status), personal experience with cancer and AD, and opinions about being told the diagnosis of these diseases. RESULTS: Most participants (n = 124, 79.5%) responded that they would prefer to know if they had AD, but the number was significantly fewer (Fisher exact test, P < .001) than those who would want to know if they had terminal cancer (n = 143, 91.7%) Interestingly, significantly fewer married subjects would want their spouse to know if the spouse had either illness. Only 65.7% (n = 69) of subjects would want their spouse to know if the spouse had AD (Fisher exact test, P = .008), whereas for cancer, 80.2% (n = 77) would want their spouse to know if the spouse had cancer (Fisher exact test P < .001). No demographic variables distinguished subjects who did from those who did not want to know the diagnosis for themselves or their spouses for either AD or cancer. Among the reasons some subjects gave for wanting to know of the diagnosis of AD was being able to consider suicide. CONCLUSION: Although these results may support disclosure of diagnosis for most patients with AD, clinical and ethical issues remain in individual cases.