As Dresser (this volume) indicates, many of the concerns in elder mistreatment research relate to the assessment of decision-making capacity and the proper responses to situations in which potential participants’ decision-making capacity is impaired. Taking into account that elderly persons who are most vulnerable to mistreatment are likely to be decisionally impaired, and that decisional impairment is often embedded in the statutory definition of mistreatment, the opportunity to elicit information from cognitively impaired individuals is essential in almost every study of elder mistreatment. The problem is by no means limited to elder mistreatment research; similar observations could be made about many other types of research focusing on older subjects or on people with mental retardation or schizophrenia. Not surprisingly, ethical issues relating to consent by cognitively impaired subjects and surrogate decision making have come to center stage in recent years and have been addressed in a rapidly developing literature (Berg, 1996; Bonnie, 1997; Dresser, 1999; National Bioethics Advisory Commission, 1998). Although the Dresser paper provides a thorough review of these issues, several points are emphasized here.
First, aging research suggests that most older adults are cognitively intact and should be regarded as presumptively able to make informed, voluntary decisions about research participation; merely being older than age 65 or 75 does not warrant special screening procedures or other protections. Heightened safeguards should be considered when the research involves greater than minimal risk and the study population is especially likely to include persons with decisional impairments or persons who are especially vulnerable to pressure or influence.
Second, a diagnosis of dementia is not congruent with decisional incapacity (Marson et al., 1995). Instead, an assessment of decisional capacity requires a highly contextualized judgment concerning a particular person’s ability to perform ethically relevant decision-making tasks in relation to a particular study. Significant advances have recently been made in conceptualizing, operationalizing, and measuring these decision-making abilities. For example, according to one widely used approach, the ethically relevant abilities in making informed decisions about treatment or research participation are understanding of risks and benefits and other ethically relevant information, appreciation of the relevance of that information in one’s own situation, reasoning or processing the information logically, and ability to make a stable choice among alternatives (Appelbaum and Grisso, 1988; Grisso and Appelbaum, 1998). Instruments are being developed to help researchers assess and document participants’ decision-making abilities, both at the initiation of the study and, if needed, on a continuing basis during the study (Kim et al., 2001; Marson et al., 1995).