Family members favor disclosing the diagnosis of Alzheimer's disease

Abstract

Background: Past negative attitudes towards patients with Alzheimer's disease (AD) have changed in recent years. However, the disclosure of AD diagnosis to patients and family remains an unresoved issue. In this study, we surveyed the family members of neurological patients in Taiwan for the purpose of assessing their attitudes towards the disclosure of AD diagnosis.

Methods: The study sample consisted of family members (150, age range 23–89 years, mean 55.0±14.3) who accompanied patients to a neurology outpatient clinic from September 15 to November 24, 2003. The subjects were given an Attitude Questionnaire on AD Disclosure.

Results: An overwhelming majority (93%) of subjects favored disclosure of the diagnosis if, hypothetically, they personally were affected by AD. However, a smaller majority of family members (76%) favored disclosure of the diagnosis to current AD patients. Reasons for favoring disclosure included a patient's or family member's right to know, the possibility of assistance in coping with and understanding dementia, and slowing down the progression of the disease by early treatment, as well as the increased probability of accepting treatment and life activity training. Reasons for favoring the withholding of disclosure included the risk of causing the patient emotional disturbance, worsening the disease, the irrelevance of disclosure to drug therapy, and the possibility of causing suicidal ideation. Subjects' attitudes towards disclosure of AD diagnosis were unaffected by their knowledge of dementia, the presence of a family member with AD, their role as the primary caregiver, the length of time that AD symptoms persisted, and the number of hours per day spent in caring for AD patients.

Conclusions: In Taiwan, family members of neurological patients strongly favor being informed and the disclosure of AD diagnosis to the family.