Demented patients' participation in a clinical trial: Factors affecting the caregivers' decision

Clinical trials for Alzheimer's disease take place in medical centers all o ver the world. Patients and caregivers have to decide whether or not to agr ee to participate in clinical trials. This study aimed to investigate the m otivation that determines the caregivers' choice. Nineteen caregivers of de mented patients who consented to participate in a clinical trial in our Mem ory Clinic and 10 caregivers who refused to participate were interviewed. T he data were gathered by a self-report questionnaire covering various aspec ts of the caregivers' decision-making process. Among the reasons for agreei ng to participate in the clinical trial were the respondents' belief that i t would improve or help to maintain the patients' condition. Most of the re spondents of both groups indicated that information regarding side effects and success probability was adequately provided in advance. The primary rea son for refusal was the potential side effects of the drug. The implication s of the findings are discussed. Copyright (C) 2000 John Wiley & Sons, Ltd.