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Executive Summary E lder mistreatment is a recognized social problem of uncertain, though probably increasing, magnitude. According to the best available estimates, between 1 and 2 million Americans age 65 or older have been injured, exploited, or otherwise mistreated by someone on whom they depended for care or protection. The frequency of occurrence of elder mistreatment will undoubtedly increase over the next several decades, as the population ages. Yet little is known about its characteristics, causes, or consequences or about effective means of prevention. This report is in- tended to point the way toward better understanding of the nature and scope of the problem, a necessary condition for the development of in- formed policies and programs. As defined in this report, âelder mistreatmentâ refers to (a) intentional actions that cause harm or create a serious risk of harm (whether or not harm is intended) to a vulnerable elder by a caregiver or other person who stands in a trust relationship to the elder or (b) failure by a caregiver to satisfy the elderâs basic needs or to protect the elder from harm. The term âmistreatmentâ is meant to exclude cases of so-called self-neglectâfailure of an older person to satisfy his or her own basic needs and to protect himself or herself from harmâand also cases involving victimization of elders by strangers. While elder mistreatment has attracted sustained efforts from practitio- ners and some interest from policy makers over the past two decades, it has not received concomitant attention from researchers or from the agencies that provide research funding. No major foundation has identified this field as one of its priorities, and the federal investment has been modest at 1
2 ELDER MISTREATMENT best. For example, fewer than 15 studies on elder mistreatment have been funded by the National Institute on Aging (NIA) since 1990, and support from other agencies has been even less substantial. As a result, elder mis- treatment research has thus far been confined to a small community of investigators who have produced a modest body of knowledge concerning the phenomenology, magnitude, etiology, and consequences of elder mis- treatment. Estimates of mistreated elders have been based on sample sur- veys in local areas and projected to the total U.S. population. Preventive and remedial interventions have been unsystematic, episodic, and poorly evaluated. In recognition of these deficiencies, the National Institute on Aging requested the National Research Council, through the Committee on National Statistics, to establish a panel of experts to assess the current state of knowledge in the area of elder mistreatment and to formulate a set of recommendations for a research agenda in that field. When the body of published and unpublished research reports on elder mistreatment is examined as a whole, a number of weaknesses emerge: â¢ Unclear and inconsistent definitions â¢ Unclear and inadequate measures â¢ Incomplete professional accounts â¢ Lack of population-based data â¢ Lack of prospective data â¢ Lack of control groups â¢ Lack of systematic evaluation studies Among the factors accounting for these deficiencies are: â¢ Little funding and few investigators â¢ Methodological uncertainties, especially about surveys â¢ Ethical uncertainties regarding research practices â¢ Inadequate links between researchers and service agencies â¢ Impoverished theory â¢ Intertwined and varying research definitions and statutory defini- tions â¢ Divergent research traditions in gerontology and family violence In order the rectify these problems and to propel the field forward, the panel recommends the following agenda for research. RECOMMENDED RESEARCH AGENDA Basic research on the phenomenology of elder mistreatment is a critical early step in the further development of the field. Such research will lead to
EXECUTIVE SUMMARY 3 a much better understanding of the key elements of elder mistreatment, which in turn will facilitate the development of broadly accepted opera- tional definitions and the development of research and clinical measures for these phenomena. Examples of such research include studies of: (1) the kinds of trust relationships that older persons enter into, the other parties involved in these relationships, the foundations of these relationships, and their association with different types of mistreatment; (2) the different types of harms that mistreated older persons may suffer, the interrelationship of the different harms (e.g., relationship of physical to emotional to financial), the severity of harms, their temporal characteristics, and their natural his- tory; (3) the injurious conduct or omissions of other parties in trust rela- tionships, how they manifest themselves, and their natural history; (4) the psychological effects of mistreatment, including types of psychological harm, their presentation, and their natural history; and (5) the circum- stances under which harm is most likely to have been caused by the acts or omissions of another person. Development of widely accepted operational definitions and validated and standardized measurement methods for the elements of elder mistreat- ment is urgently needed to move the field forward. The field must develop widely accepted operational definitions of the elements of elder mistreat- ment, its different forms, and associated risk factors and outcomes. The field must also develop a series of measures for these elements, with good (and known) reliability and validity. A menu of measures is necessary for each of the multiple contexts of research, including screening and case identification in clinical settings as well as studies of elder mistreatment in populations. Population-based surveys of elder mistreatment occurrence are feasible and should be given a high priority by funding agencies. Preparatory funding should be provided to develop and test measures for identifying elder mistreatment. There is inadequate information on elder mistreatment occurrence among both community-dwelling and institutionalized elders. However, before embarking on such surveys, the aims and rationale for them should be clearly delineated, and the strengths and weaknesses of the survey methodology fully understood. Different methods and approaches may be required for various types of mistreatment, and multiple modes of case ascertainment should be considered and evaluated. Survey-acquired information could be enhanced by appropriately applied record linkage techniques. Complementary study of biomarkers that may enhance elder mistreatment case identification should be explored. Funding agencies should give priority to the design and fielding of national prevalence and incidence studies of elder mistreatment. These studies should include both a large-scale, independent study of prevalence and modular add-ons to surveys of aging populations. Acquiring valid
4 ELDER MISTREATMENT national elder mistreatment occurrence rates is critically needed for im- proved policy formulation. After appropriate methodological development, a national survey of elder mistreatment occurrence and risk factors, de- signed to inform important policy issues relevant to elder mistreatment prevention and treatment, should be conducted. It is logistically feasible to add elder mistreatment case screening or detection modules to existing, comprehensive geographic health and social surveys, including longitudinal studies of aging populations, and attempts should be made to further this application. Those surveys that have access to frail, vulnerable elders and that contain study variables related to the risk or outcomes of elder mistreatment are the ones most likely to be fruitful. Such piggybacking of elder mistreatment items and instruments could also serve as a test bed for developing methodology intended for national sur- veys. In addition to improved household and geographically referent sam- pling techniques, new methods of sampling and identifying elder mistreat- ment victims in the community should be developed in order to improve the validity and comprehensiveness of elder mistreatment occurrence estimates. It is likely that household sampling, while extremely useful, will be incom- plete to some degree because of difficulty in gaining access to those house- holds and respondents most at risk of elder mistreatment. A particular problem is accessing and characterizing the wide variety of assisted living and related residential facilities where many vulnerable elders are located. Developing additional ways to approach and access these populations may require other sampling techniques, such as through social networks and institutions, or the health care system. The clinical course, antecedents, and outcomes of the various types of elder mistreatment occurrence are poorly understood, necessitating more longitudinal investigations, including follow-up studies of the clinical, so- cial, and psychological outcomes of elder mistreatment cases detected. Many elder mistreatment situations are recurrent and may have various incarnations over long periods, making the definition of an elder mistreat- ment âeventâ difficult to define. Thus, further work on the nature, period- icity, variation, and triggers for elder mistreatment are needed and will require longitudinal investigations. Furthermore, the health and social outcomes of elder mistreatment are not well studied and require further investigation, an absolute requisite for prevention and intervention research. The occurrence of elder mistreatment in the institutional setting, in- cluding hospitals, long-term care and assisted living situations, is all but uncharacterized and needs new study sampling and detection methods. Sampling and surveillance techniques may be different from those em- ployed in community-based elder mistreatment detection, and considerable innovation may be required.
EXECUTIVE SUMMARY 5 Studies are greatly needed that examine risk indicators and risk and protective factors for different types of elder mistreatment. It may make little conceptual sense to combine, for example, physical violence and ne- glect as subsets of the same phenomenon. Because of the relatively larger number of case-control studies focusing on physical violence, more reliable information regarding risk factors has emerged for that manifestation of elder mistreatment. Research is needed on risk factors for neglect, psycho- logical mistreatment, sexual abuse, and financial abuse. Further, studies of the co-occurrence of different abuse types, and risk factors for such co- occurrence, are needed. This research should not neglect the study of protective factors for elder mistreatment. A particularly critical need exists for studies of risk factors for elder mistreatment in institutional settings. Research on risk factors should be expanded to take into consideration the clinical course of elder mistreatment. Although longitudinal data are absent, it seems probable that elder abuse situations may follow a pattern similar to disease progression, which would include lead time prior to the manifestation of active signs and symptoms of mistreatment; periods of âremissionâ; and critical points in which mistreatment becomes more in- tensive or acute. Some have speculated that mistreatment typically in- creases in severity and intensity over time, but no empirical data demon- strate this pattern or individual differences in progression. Clinical accounts suggest that situations of mistreatment include cases that resolve on their own, cases in which mistreatment intensifies, and cases in which the situa- tion remains abusive but stable. It is therefore both possible and important to identify risk factors for an increase or intensification in mistreatment. For these reasons, cohort studies are of great importance in determining risk factors for elder mistreatment. Substantial research is needed to improve and develop new methods of screening for possible elder mistreatment in a range of clinical settings. These methods should be able to detect a broad range of categories of mistreatment and be highly accurate and efficiently deployed. Candidate techniques might include improved questionnaire designs; record linkage to other clinical, public health, social, and legal databases; automated alerts based on concurrent clinical records; and previously defined risk status based on prescreening methods. Special attention should be placed on the predictive value of various clinical injuries and other relevant clinical find- ings as indicators of mistreatment for therapeutic, social, and forensic rea- sons. Research is needed on the process of designating cases as incidents of mistreatment in order to improve criteria, investigative methods, decision- making processes, and decision outcomes. The absence of a gold standard for case identification, and the momentous consequences of inaccurate de- cisions, highlight the need for studying and improving the process of case
6 ELDER MISTREATMENT investigation and designation. Research assessing the capacity of older persons with cognitive impairments to provide accurate testimony is needed for improving the accuracy of case identification, not only in clinical set- tings, but also in legal settings, including prosecutorial decision making and formal adjudication. Research on the effects of elder mistreatment interventions is urgently needed. Existing interventions to prevent or ameliorate elder mistreatment should be evaluated, and agencies funding new intervention programs should require and fund a scientifically adequate evaluation as a compo- nent of each grant. Specifically: â¢ Research is needed on reporting practices and on the effects of reporting, taking maximum advantage of the opportunity for comparisons of practices and outcomes in states with and without mandated reporting. â¢ Research is needed on the effectiveness of adult protective services interventions, ideally in study designs that compare outcomes in cases in which services were provided with those in which eligible recipients de- clined offered services or other cases in which mistreatment of an equiva- lent nature has been identified. â¢ Intervention or prevention research in existing health care environ- ments that come into contact with mistreated elders, such as hospitals, emergency departments, and emergency response services, should be a pri- ority, as it takes advantage of the existing expertise and resources of these services. â¢ The development of adult protective services/university research teams should be encouraged in order to evaluate existing data, recommend improvements in the collection of data, analyze incident reports, and design the studies of outcomes urged in this report. Investigators and institutional review boards (IRBs) need clearer guid- ance (without rigid rules) concerning two issues that tend to recur in elder mistreatment research: conditions under which research can properly go forward with participants whose decisional capacity is impaired, and the proper responses to evidence of mistreatment elicited during the course of the study. In the absence of better guidance, IRBs are left setting their own criteria, leading to inconsistencies and confusion. Cooperative research between agencies or organizations is also difficult, if not impossible, since different IRBs often take different positions on these issues, including what information must be disclosed to obtain informed consent. As a first step in this direction, the panel has sought to clarify some of the issues in these two areas and to provide some needed guidance. Eventu- ally, the National Institute on Aging, in consultation with the Office of Human Research Protections and other federal partners, should take steps to promote further clarification, thereby helping investigators and IRBs to
EXECUTIVE SUMMARY 7 achieve the proper level of participant protection while enabling important research involving older and vulnerable adults to move forward. An adequate long-term funding commitment to research on elder mis- treatment must be made by relevant federal, state, and private agencies to support research careers and to develop the next generation of investigators in the field. Knowledge about elder mistreatment will advance only if its importance is recognized by policy makers and funding agencies, if stable research support is provided, and if useful theories and methods are suc- cessfully extrapolated from relevant disciplines and adjacent fields of re- search. Recognizing that elder mistreatment crosses categorical boundaries in both health research and social science research, federal funding agencies (e.g., the National Institute on Aging, the Administration on Developmen- tal Disabilities and Rehabilitation Research, and the National Institute of Justice) should work collaboratively to promote research on the abuse and financial exploitation of vulnerable adults, including older persons as well as younger adults with disabilities. One promising approach for strengthening the scientific and political foundation of the caregiving aspects of elder mistreatment research would be to locate it in the domain of quality assurance in long-term care. It is already understood that prevention of mistreatment is a core element of quality assurance in nursing home regulation. Protecting elderly people in community settings, including their own homes, represents a parallel chal- lenge for public policy and an overlapping agenda for researchers aiming to understand the phenomenology, etiology, and consequences of mistreat- ment and the interventions that can reduce it. By viewing elder mistreat- ment through the prism of quality assurance (safety and security) in long- term care, it is possible to draw together the frameworks and methods of researchers studying the needs of, and services provided to, vulnerable elderly people in various long-term care settings, as well as those used by researchers studying power and conflict in human relationships. CONCLUSION Systematic implementation of these recommendations will help estab- lish a sound foundation for advancing knowledge on elder mistreatment. A genuine long-term commitment of resources to this important, though un- derstudied, area will also help to recruit a new generation of scientists to field. By the same token, however, it is clear that, in the absence of the kinds of investment recommended in this report, knowledge and under- standing of elder mistreatment will remain thin, even as the population ages and the occurrence of mistreatment increases. A substantial commitment to research is needed to inform and guide a caring society as it aims to cope with the challenges ahead.