Use of proxies to measure health and functional outcomes in effectiveness research in persons with Alzheimer disease and related disorders.

As the focus in the study of Alzheimer disease moves from the laboratory and research-oriented care setting to the broader array of community settings where effectiveness research takes place, it becomes necessary to rely less on medical records and reports of health care professionals experienced in following research protocols and more on observers who are not trained to interpret and report their observations in a standardized way. The present paper targets the use of proxy interviews to obtain information about health and functional outcomes for effectiveness research. Included are indications of the type of information that may be obtained from proxies, a discussion of issues surrounding the use of proxies in research on older persons with cognitive impairment, a summary of the current state of knowledge in this area, identification of practical strategies researchers may employ when using proxies, and recommended directions for further research.