Ethical issues in Alzheimer disease: the experience of a national Alzheimer society task force

Abstract

There has been increasing recognition of the ethical dilemmas that arise in the delivery of health care services and in planning and executing scientific research. Alzheimer disease (AD) and related dementias pose a particular challenge for families, care providers, and researchers because of the nature of the illness. Naturally, those at potential risk of developing the disease are eager for scientists to develop valid predictive tests for the disease. Alzheimer organizations have developed worldwide in response to the growing awareness and knowledge of the effects of dementia on individuals and their families. These organizations have played a role in advocating for research, increasing general awareness of the nature of the disease, and lobbying for more services for persons with dementia and their families. These organizations have also realized the increasing concern about the many ethical issues that arise in caring for those with AD and researching causes and cures. This paper describes a unique process one national Alzheimer society used to develop an Ethics Task Force to provide guidelines on ethical issues.