Do caregivers' experiences correspond with the concerns raised in the literature? Ethical issues relating to anti-dementia drugs

Background: The use of Cholinesterase inhibitors (ChE-Is) has raised debate in the literature on the ethical issues of drug treatment in dementia patients. These issues concern the quality of life of dementia patients and the process of decision-making regarding the use of ChE-Is. We interviewed caregivers of patients with dementia, focussing on issues of quality of life and the process of decision-making regarding the use of anti-dementia drugs. Aim: The aim of this article is to explore whether the ethical concerns raised in the literature are actually in line with experiences in the daily practice of dementia care. Methods: Qualitative data that have been collected by semi-structured interviews with 12 caregivers of patients who (had) used ChE-Is. Results: The results seem to indicate that theoretical considerations should be modified in the light of the reported experiences of caregivers. For example, problematic consequences of an early diagnosis and the creation of unreasonable hope did not appear in the study. Also problems concerning the rising awareness of cognitive decline were not found. Conclusion: In the interest of an ongoing ethical debate on the development and use of anti-dementia drugs it is important to further specify theoretical issues and to conduct empirical research into the practice of decision making and to get more insight in the perspectives of the patients using anti-dementia medicines themselves.