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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America 4 The Occurrence of Elder Mistreatment This chapter reviews the scientific and logistical issues pertinent to the determination of mistreatment occurrence in the United States and elsewhere, identifies gaps in knowledge, and makes recommendations for possible research directions. Research to determine mistreatment occurrence rates or trends should, above all, be guided by the rationale for conducting the epidemiological inquiry. Is universal case finding critical within a population, or will probabilistic assessments to estimate incidence and prevalence suffice? Will the findings be used for specific local adult protective program design or as a guide to general policy formulation? Will there be a search for community indicators of elder mistreatment that are easily available or ascertainable if not totally accurate or precise? How will the findings inform clinical practice activities, particularly those related to frail older persons? Will private or governmental funds be allocated based on the findings, either for general prevention and control, criminal justice programs, or specific agency budgets? While the various available methods for determining occurrence estimates vary in precision and completeness, all may be of substantial value. Basic to determining mistreatment occurrence rates is an understanding of sound epidemiological principles and vocabulary. While this is beyond the scope of this volume, an introduction to basic epidemiological study design is presented in Box 4-1 to enable the nonspecialist reader to better understand the discussion that follows.
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America BOX 4-1 An Overview of Epidemiological Study Designs Epidemiology can be defined as the study of the distributions, determinants, and outcomes of health and disease in populations. These populations may be geographically defined, but they may also be clinical or institutional groups. Full population definition usually requires further demographic characterization, at a minimum. The determinants or causes of health and disease states are often referred to as risk factors. Outcomes of interest span a wide spectrum, including, for example, mortality, symptom severity, disease progression, other new mental and physical conditions (morbidity), the costs of illness, disability and dysfunction, and satisfaction with medical care. Epidemiology may be observational, wherein the world is observed as it is, or experimental and interventional, wherein experimental or quasi-experimental interventions are invoked Within observational epidemiology, descriptive epidemiology generally refers to the quantitative occurrence of health and disease phenomena in characterized populations, often using rates over a specified period of time, and requiring a known population denominator. For example, a prevalence rate describes how frequently the event of interest, regardless of time of onset, occurs at any point within a specified time interval. An incidence rate is the rate of new events in the population occurring within that interval. Epidemiology can also be analytical as well as descriptive. There are many analytical study designs to assess population phenomena; three are basic to assessing health and disease in populations. Cross-sectional assessments or surveys, at one defined point in time, can be used to determine prevalence rates, characterize those in whom the events of interest exist, and explore statistical associations among the study variables of interest. The case-control, or retrospective, study takes many forms and is mainly intended to identify risk factors for diseases and conditions. In its simplest application, new cases of a disease are identified, a demographically similar control group is designated, and differences in prior “exposure” rates to the risk factors of interest are calculated. The cohort or longitudinal study in essence starts with a defined population in whom putative risk factor information has been well characterized, but in whom the disease or condition of interest has not yet occurred. The population is then followed for incident events of interest, which are then related to previously acquired risk factor information. Each type of study can be elaborated and each has strengths, weaknesses, and methodological nuances. Full descriptions of these epidemiological methods for both community and clinical settings can be found in standard textbooks of epidemiology and clinical epidemiology. OCCURRENCE OF ELDER MISTREATMENT While clinical descriptions of elder mistreatment are present in historical texts, even now there have been few population-referent, geographically based studies of elder mistreatment occurrence in the modern, peer-reviewed literature. The latter third of the twentieth century saw the descrip-
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America tion of the clinical syndrome and reports of various series of elder mistreatment victims, usually from geriatrically oriented facilities or programs managing chronic illnesses in older persons, and later from social service agencies. Gradually, recommended elder mistreatment definitions and criteria began to appear, and many of these recommendations have been published (see Chapter 2). Often, the basic demographic and clinical characteristics of elder mistreatment patients were defined in part by the nature of the study facilities as well by the patients/victims. Early clinical descriptions paved the way for later studies of elder mistreatment risk factors. Using case records from public health nurses, Phillips (1983) reported one of the first case-control studies of risk factors for elder abuse. Estimates of the occurrence of abuse and neglect have varied from about 2–10 percent annual incidence, although the bases for these estimates are modest and uncertain (Branch, 2001). The issue of incidence versus prevalence and the recurrent nature of the problem among individual victims and other issues (discussed below) make these estimates very insecure. For example, Thomas (2000) reviewed both formally published and other data on elder mistreatment occurrence. The lack of population-based studies in this review is clear, and much of the information reviewed came from institutional and social service agency sources. Other than representative household samples, some research has explored samples of adult protective service workers, assessing their observations and experiences (Dolan and Blakeley, 1989) and other public and private institutional employees who may have contact with abused elders, such as police authorities, hospital personnel, and bank employees (National Center on Elder Abuse). While important, these approaches identify only those (potential or actual) elder mistreatment victims who have come to public attention and probably underestimate the true elder mistreatment occurrence rates. One of the first and historically most important population-based studies of elder mistreatment was conducted by Pillemer and Finkelhor (1988). This was a prevalence study using a probability sample of noninstitutionalized persons age 65 and older residing in metropolitan Boston. Interviews were conducted over the telephone and in person using structured questionnaires and standardized criteria for three domains of elder mistreatment: physical abuse, psychological abuse, and neglect. About 72 percent of the eligible respondents were interviewed. Including all three elder mistreatment domains studied, they reported an overall rate of 3.2 percent. A few other population-based studies have been published. Comijs et al. (1998) studied physical and psychological abuse in a cohort of Dutch elders in Amsterdam, using structured interviewing techniques. Overall, the one-year prevalence of elder mistreatment was 5.6 percent, with verbal aggression being the most common; the prevalence of physical aggression was 1.2 percent. In a telephone interview study of national samples from
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America Sweden and Denmark, Tornstam (1989) queried respondents about whether they had observed or knew about specific cases of persons who had been physically battered, threatened, economically abused, robbed, or severely neglected. The overall rate defined this way was 8 percent, but most cases were due to a single incidence of theft. The definitions were not always consistent with those used in other elder mistreatment studies, but most importantly, the individual respondent was not the unit of analysis. Podnieks (1992) reported the findings from a representative telephone survey of Canadians age 65 and older. Domains included physical abuse, neglect, psychological abuse, and “material abuse.” The overall prevalence rate was about 4 percent, but this was a cumulative experience since age 65, so the annual rates would be difficult to calculate; the most common form was material abuse (2.6 percent). Ogg (1993) attempted to repeat the Pillemer and Finkelhor survey in London but for methodological reasons was unable to obtain credible occurrence information. Thus, based on the published, peer-reviewed literature and some efforts at obtaining unindexed, non-peer-reviewed studies, there appears to be little population-based information about elder mistreatment occurrence, including the clinical course and outcomes of proven events. It appears that more population-based approaches to elder mistreatment, including nationally representative samples, are needed. Even less information is known about elder mistreatment occurrence in institutional settings. Event detection is extremely challenging and to date only indirect approaches have been employed to make estimates. The paper by Acierno (this volume) summarizes the primary ways in which elder mistreatment has been detected: (a) direct interview surveys of potential victims by telephone, personal interview, or self-administered questionnaire), (b) interviews of families or caregivers of possible victims or others with a trust relationship, (c) clinical or social service institutional record review, (d) placement of sentinel reporters within these agencies or organizations, and (e) acquisition of criminal justice information. Historically, these techniques have been applied most consistently and will be likely to continue to be important. Corder (2001) reviews many of the issues in population sampling and surveying relevant to household assessment of elder mistreatment occurrences. A summary of overall strengths and weaknesses of these approaches is shown in Table 4-1. However, other, less explored methods for identifying elder mistreatment cases are available for research evaluation: (a) a two-stage process, beginning with screening potential victims for risk factors or risk indicators, using questionnaires, medical record review, and various biomarkers, with subsequent more intensive evaluation of high-risk persons, (b) screening fiscal records for types of behaviors associated with financial abuse, (c)
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America active screening of older patients during general medical interactions, either inside or outside institutional settings, (d) provision of telephone hot lines, widely publicized and intended to attract victims who can then be further evaluated, (e) network sampling of social situations in which some forms of elder mistreatment are possible, (f) enhanced identification of high-risk persons or elder mistreatment cases using record linkage techniques, (g) the application of forensic techniques in medical settings, and (h) surreptitious surveillance of institutional staff in the work setting. None of these approaches is new, but they at least suggest that innovative approaches to case detection and surveillance are possible, and that is a needed research direction. IMPORTANT EPIDEMIOLOGICAL CONSIDERATIONS Important research issues relevant to defining, understanding, and advancing knowledge of elder mistreatment are discussed throughout this volume. These issues require detailed attention and are important requisites for planning population- and institution-based epidemiological research on elder mistreatment occurrence. The following sections synthesize and highlight some of these issues specifically with respect to determining elder mistreatment occurrence, adding further suggestions for conducting this research. Defining the Situations and Circumstances Being Measured Chapters 1 and 2 delineate the types and vocabulary of elder mistreatment. While no investigator must adhere to any particular elder mistreatment conceptualization, specification of the nature and types of mistreatment being assessed in a study is critical, both for understanding and interpreting the findings and for possible scientific replication. In particular, operational definitions are critical for quantitative studies under all circumstances, especially when multiple interviewers, geographic sites, institutions, or cultural groups are involved. The structure of survey items eliciting elder mistreatment flows directly from the posited elder mistreatment definitions. Since it is axiomatic that in general survey responses will vary according the wording of survey items, it seems likely that this will be an issue here as well. Thus, careful item structuring will require consummate attention. In addition, item detail and explicitness may alter the type of responses. This was recently demonstrated in a related area—the survey of assessment of sexual victimization among college women (Fisher et al., 2000).
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America TABLE 4-1 Strengths and Weaknesses of Different Approaches to Population-Based Elder Mistreatment Case Identification Elder Mistreatment Case Identification Strategy Strengths Weaknesses 1. Interview of potential victims; all modes -Victims can be identified with regularity through self-report. -Nature and severity of the mistreatment acts as well as many antecedents can be characterized. -Structured operational criteria for case definitions can be most rigorously applied. -Some elder mistreatment victims will not admit mistreatment events for various reasons. -Cognitive impairment may preclude accurate reporting. -Interview setting in which perpetrators are present may deter reporting. -Access to some elder mistreatment victims may be limited by sampling incompleteness, household refusals, language barriers, or illness. -Not appropriate for study of fatal events. 2. Interview of families, other caregivers, and others in trust relationships -Perpetrators are known to relate some elder mistreatment events. -Proxy respondents may report some elder mistreatment events more accurately, as well as some respondent characteristics (e.g., belligerent behavior). -Structured, operational criteria can be uniformly applied. -Many perpetrators may not report elder mistreatment events. -Proxy respondents may have imperfect knowledge of events. -Some proxy respondents may have illness, frailty, or cognitive impairment. -Some characteristics of respondents can’t be obtained by proxy interview (e.g., emotional status). 3. Clinical or social service institutional record review -Level of objective documentation likely to be high. -Treatments and social interventions documented. -Historical data more likely to be obtainable. -Only selected and more severe cases may be present. -Case definitions may not be consonant with those of investigators. -Clinical observations are often unstandardized in measures and notation. -Ancillary and risk factor information may not be collected in a systematic manner.
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America Elder Mistreatment Case Identification Strategy Strengths Weaknesses 4. Placement of sentinel reporters within clinical and social agencies or organizations -May identify cases that otherwise would not be detected or come to clinical attention. -Observers can be sensitive to case screening or detection criteria. -May be the most effective method in long-term care settings. -Observers are often professionals who have other obligations. -Variation in personal powers of clinical observation. -Ethical issues in the insertion of observers in some settings. 5. Acquisition of criminal justice information -Can identify some cases that otherwise may not be subject to clinical or social service detection. -Legal dimensions of elder mistreatment occurrence more fully documented. -Cases likely to be a highly selective subsample of cases, more severe, and only of certain types. -Information may not be collected in a systematic manner. Specifying the Unit of Measurement As Acierno (this volume) and others suggest, the elder mistreatment “event” is not always easy to characterize. Target elder mistreatment events for detection may be single or multiple occurrences, happening over short or long periods of time, and involving one or more victims (particularly in the institutional setting) or one or more perpetrators, yielding potentially diverse clinical, social, or functional outcomes. Thus, a variety of events may make up the numerator of interest: a single act by a perpetrator, a single act on a victim, a series of elder mistreatment acts by a perpetrator regardless of the number of victims, a series of acts on one victim, and so on. Similarly, the denominator used in rate calculations may vary and requires clear specification. Is it all persons in an age group, all persons in a trust relationship, all persons exposed to a potential perpetrator, or persons with a particular risk profile? Will the analysis be presented as a “person-time” calculation, in which potential victims are at risk only during specified times, such as the night shift in a long-term care institution? The complex and fluid nature of social “exposures” requires great care in specifying both the numerator and denominators in occurrence rates.
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America Understanding the Clinical Course and Outcomes of Elder Mistreatment As noted above, clinical observation suggests that elder mistreatment may take place over a long period of time, and that only at certain times, such as when a severe injury or evidence of willful neglect increases, will the situation become clinically, socially, or legally apparent. As pointed out by Acierno (this volume) and suggested in other studies of later-life suicide attempts (Dube et al., 2001) and victimization from sexual or physical abuse (Cold et al., 2001), for some elder mistreatment victims the origins may reach back to youth or young adulthood, or they have been in place within a family relationship for many years, although the causal mechanisms are unclear. Ascertaining multiple events over long periods, particularly in retrospect, can understandably be extremely difficult. However, not only for defining the start of an “incident” elder mistreatment event, but more importantly for understanding the causes and trajectory of elder mistreatment, a broad, sometimes lifelong view of the problem seems essential. This amplifies the plea for more longitudinal studies of elder mistreatment. It is possible, for example, that retrospective medical record review, when available, may identify early elder mistreatment events that were unrecognized at the time. In medical parlance, it seems likely that many cases of elder mistreatment are remittent or recurrent but, with few exceptions (Lachs et al., 1997b), there is little quantitative work on this issue. A similar issue relates to the short- and long-term impact of elder mistreatment on victims. A critical question that is almost unanswered is how elder mistreatment relates to the clinical, social, institutional, financial, psychological, and mortal outcomes of elder mistreatment victims and the overall impact of elder mistreatment on elder population health. For example, an important issue in gerontological public health is whether the mobility and functional status of elders in the United States has been improving, paralleling the increasing longevity seen in the latter part of the twentieth century (Manton et al., 1997; Freedman and Martin, 1999; Schoeni et al., 2001). This is important for forecasting and planning future health care and fiscal needs. Given the evidence that at least some population functional improvement has occurred, evidence to explain this phenomenon should be sought, in order to enhance preventive and therapeutic practice. It is at least a hypothesis that knowledge of elder mistreatment occurrence rates over time could be helpful in understanding secular trends in the prevalence and outcomes of elder population disability. In fact, elder mistreatment may be important and common enough to also consider when planning and evaluating long-term disease and disability prevention and treatment trials targeting vulnerable, dependent, and frail elders. Clinical, functional, and population elder mistreatment outcomes could
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America be studied in several research contexts. One set of relevant outcomes relates to the immediate consequences of mistreatment itself, including such factors as return to previous health status, wound or fracture healing rates, preservation or loss of psychological well-being, the status of general chronic disease control measures, and the immediate social and legal responses to mistreatment. Another set of outcomes relates to the effects of whatever interventions transpire, not only on the rates and intensity of further mistreatment, but also on new and preexisting medical conditions, victim satisfaction with the intervention, the types of medical service utilization engendered, the costs of the intervention process, and the long-term costs of social and medical care. One particularly interesting question is whether, and under what circumstances, subjective measures of personal security or well-being could be developed as an ultimate outcome measure, both for the effects of mistreatment as well as for the effects of interventions. Obviously, many other factors affect an individual’s personal sense of security, and studies using such a measure of outcome would have to deal with this problem methodologically, but this is a challenge worth undertaking. As a research question, it would be interesting to know whether this perception is related to the ability to restore optimal medical and mental health and well-being after elder mistreatment is detected and addressed. Interface with the Public Health, Medical Care, and Social Services Systems From a community perspective, it is clear that cases of elder mistreatment are underascertained by existing public health, social, medical, and legal activities and systems; this is understandable despite the need for improvement. Several papers in this volume acknowledge the important roles of these systems and programs in identifying cases as one technique for determining elder mistreatment occurrence. This is particularly true since a substantial proportion of elder mistreatment episodes appear to occur in frail elders, who are perhaps least likely to participate in household surveys. As reviewed by Acierno and Dyer et al. (this volume), there has been considerable work in trying to improve recognition of elder mistreatment in the formal program setting, especially within clinical health and social services. It seems clear that more research is needed on the interface of elder mistreatment with these services, and it is important to understand the nature and value of increased and more refined medical and social surveillance and screening practices on geographically based elder mistreatment rates. Health care settings could be particularly important, since each year approximately 85 percent of persons age 65 and older use formal ambulatory care services and 16–20 percent are hospitalized. With the
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America inclusion of long-term care service use and the various forms of residential and assisted living that contain chore or clinical services, as delineated by Hawes (this volume), few elder mistreatment victims would be outside the reach of some type of screening, and most could be identified if accurate, inexpensive, and comprehensive methods were available. As case detection and epidemiological research on elder mistreatment proceed, the importance of some basic public health notions becomes clear. It is important to distinguish between screening, where-by someone is put into an “elevated probability” group for further evaluation, and case finding, where-by an actual designation of elder mistreatment is made. Both in research and practice, the two approaches encompass different levels of rigor and investigation (see Chapter 6 for further discussion). Any substantial increase in either activity could lead to increased elder mistreatment detection rates and could lead to spuriously increased population occurrence rates; community-based elder mistreatment prevention and treatment programs should be alert for this. Screening research could usefully be applied to many settings, including all types of medical care sites, social service and adult protective service settings, and the legal and judicial systems. As this research progresses, it would also seem to be of value to monitor the extent of overall community elder mistreatment screening and case finding, to better understand whether observed changes in elder mistreatment secular trends may be due to variation in surveillance intensity. There may also be long-term variation in the propensity of elders to verbalize and report mistreatment. Attention should also be given to the potential role of using existing or newly developed injury surveillance systems to measure and monitor trends in certain types of elder mistreatment. For example, violent deaths of elders will be included in a new National Violent Death Reporting System that will provide much richer information than is currently available from existing data sources on homicides and suicides (see Institute of Medicine, 1999). While current surveillance of nonfatal injuries is limited, even the existing data collected in emergency departments and through hospitals are not very sensitive for elder mistreatment. The panel encourages the National Center for Injury Prevention and Control of the Centers for Disease Control and Prevention (CDC) to study ways of enhancing the utility of existing injury surveillance systems for identifying elder mistreatment and of incorporating it into newly developed systems. Other types of public health surveillance could also be useful in measuring the occurrence of elder mistreatment. In many jurisdictions the public health system provides various levels of preventive and medical care, often emphasizing vulnerable populations, as well as inspecting and licensing long-term care institutions. Research on surveillance efficacy in these settings may also be of value.
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America Relation of Risk Factors to Occurrence Chapter 5 delineates much of what is known about risk factors for elder mistreatment, and these are not reviewed here. Chapter 5 and the paper by Acierno make the important point that risk factors may be related to the environment or to the characteristics of the perpetrator, not only to those of the victim. Acierno also notes that some elder mistreatment research projects use “known” risk factors for case definition, such as dimensions of dependence and vulnerability, possibly limiting the ability to study these factors or to identify related risk factors. Investigators should be alert to this issue when conducting community surveys. For example, if an elder mistreatment case definition demands the presence of frailty or vulnerability, then risk factors for elder mistreatment that may be associated with more robust older victims cannot easily be explored. A related issue is the problem of applying clinical risk factors to case definitions of elder mistreatment. Older persons, particularly frail elders, have many clinical problems and dysfunctions, and from both conceptual and statistical perspectives it may be challenging to use these risk factors for case ascertainment. For example, among general, community-dwelling populations over age 65, over half may have at least one chronic illness and at least one physical limitation or dependence. In addition, general symptoms such as pain, fatigue, and sleep problems abound, as well as organ-specific complaints, related, for example, to the skin and or the gastrointestinal tract. Thus, the specificity of these factors for case designation may be lower than hoped. This is discussed more fully in Chapter 6 on case ascertainment in the clinical setting. It may also be useful to distinguish between a risk factor, for which a causal association to elder mistreatment is being sought, such as the social isolation of a victim, from a risk indicator, a certain characteristic that is associated with elder mistreatment but is not thought to be causal. An example of the latter is an environmental (contextual) factor, such as living in a community in which the police make frequent domestic violence calls. It is also possible that some putative risk factors, such as cognitive or other functional impairment, may in some instances result from elder mistreatment as well as being potential causes, as these impairments may be due to head trauma, misuse of medications, or some forms of bodily neglect. This is another reason why understanding the clinical course of elder mistreatment is critical to its detection. It may also be worth restating here that some risk factors may only be relevant to certain forms of elder mistreatment, and not to all of its forms and manifestations. There still is a large amount of work to be done in defining risk factors for elder mistreatment. More community-based and institution-based studies are needed, and they should be done in geographically, economically,
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America and culturally diverse populations. Also, much more work needs to be done on how elder mistreatment victims are detected and managed in various health care systems and in communities with varying levels of long-term care and adult protective service availability. Several papers in this volume note the use of qualitative techniques to further define the various elder mistreatment “syndromes” and characteristics; further application of these methods would seem to be of value. Finally, very little is known about elder mistreatment occurrence and related risk factor status among minority populations in the United States, including cultural variation in how mistreatment is defined and perceived. In general, a more diversified approach to research on risk factor and occurrence assessment would achieve several ends: (a) more critically defining populations with higher and lower occurrence rates, (b) determining the generalizability of putative elder mistreatment risk factor findings across such diverse populations, (c) more precisely providing sample size estimates for intervention studies within these populations, and (d) exploiting cross-cultural variation in elder mistreatment occurrence to better understand its causes. Piggybacking Assessment Modules on Existing Population Surveys One way to promote research on elder mistreatment occurrence is to add detection items and instruments to existing field surveys, particularly those that cover large geographic areas or are national in scope. This is discussed extensively by Corder (2001). On one hand, this could provide several potential advantages: it may allow substantial resource savings when compared with conducting surveys de novo; national estimation of elder mistreatment rates could be substantially enhanced; existing surveys may contain important respondent and family health, social, and economic variables that can be explored as both risk and outcome variables; and some surveys may have longitudinal data collection, allowing a time dimension not otherwise available in cross-sectional surveys. On the other hand, there may also be important limitations to this approach: sensitive assessment of elder mistreatment may not lend itself to certain modes of data collection, such as mail or telephone surveys; elder mistreatment themes may not be compatible with the other survey content; there may be different requirements and challenges in the use of proxy respondents; there may personal respondent resistance to items related to elder mistreatment; certain demographic or cultural groups may not be adequately represented in the parent surveys of interest; and content and sampling techniques may be unsuitable for many elder mistreatment scientific questions of interest. There may also be limitations on identifying or following up respondents, should substantial evidence of elder mistreat-
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America ment events emerge. Still, the use of supplementary elder mistreatment modules within existing or planned large-scale or national surveys would seem to be a potentially fruitful approach that should be further evaluated. The issue of household sampling is paramount in defining elder mistreatment occurrence rates. The general experience of household surveys targeting elders is that the older and more vulnerable potential respondents are the ones most difficult to access, leading to the potential for underassessment of elder mistreatment occurrence. Thus, in many instances, supplementary sampling approaches may be needed, such as through informal social networks, the health care system, or other social institutions. Record Linkage The limitations of interview data as the sole source of elder mistreatment occurrence are apparent. Some of those at greatest risk, as noted above, may not be able or willing to serve as survey respondents, and while Acierno (this volume) notes that family members and others may admit to elder mistreatment, the completeness and accuracy of such declarations are uncertain. Inaccurate recall among survey respondents in general and older respondents in particular is well described, and recall accuracy is further called into question by the increasing levels of cognitive impairment with advancing age. In fact, Acierno (this volume) begins his discussion of case detection methods by dichotomizing elder mistreatment victims into those with and without “significant” cognitive impairment. This may be a useful construct, but cognitive function is multidimensional and variably progressive, so from the perspective of studying elder mistreatment occurrence, it may not be easy to categorize case populations into those with and without cognitive decline in advance of applying the case ascertainment protocol itself. Clearly, the issue of determining instances of elder mistreatment among those cognitively impaired is an important research question. One potentially important method for enhancing knowledge of the occurrence and clinical course of elder mistreatment is record linkage. Determining the health, social, and economic status of older persons may profitably be enhanced by compiling information from many sources, including information from prior surveys, vital records, health care and health administrative records, social service and criminal justice records, and records from other publicly available, potentially health-relevant sectors of society. The use of primary institutional records should increase the accuracy of the information available for analysis and could complement information gained from interviews. However, there are several potential challenges to record linkage, including additional costs, the availability of electronic record systems, increasing privacy concerns (National Research Council, 2000a), and the logistics of assembling data from multiple sources.
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America Details on the value of data linkage in research and policy formulation can be found in a report from the National Research Council (1988) and other sources (Kelman and Smith, 2000). A corollary issue is the need to determine the accuracy and completeness of the records being linked. Potential Role for Biomarkers An unexplored area in determining elder mistreatment occurrence is the application of biomarkers. A biomarker in this case is any physical, physiological, or biochemical measure that could assist in identifying victims of elder mistreatment and could most easily be acquired in field surveys via blood or urine specimens. Even if biomarker associations with elder mistreatment are proven, these are much more likely to indicate increased risk and would not lead to definitive elder mistreatment designation. Some biomarker applications may relate to undernutrition, such as blood cholesterol, albumen, or micronutrient levels. Others may relate to chronic psychological or physical stress, but as blood or urinary catecholamine or cortisol levels or markers of chronic immune dysfunction. Chronic blunt trauma may increase blood or urinary myoglobin or other muscle protein degradation products. Additional forensic techniques, both antemortem and postmortem, may be useful detecting elder mistreatment cases. It is not outside the realm of possibility that genetic markers may be candidates for elder mistreatment research, to the extent that they perhaps reflect particular behaviors, diseases, or responses to stress and trauma. As one example, somatic mutation rates in the genome have been proposed as an indicator of cumulative environmental exposures (Albertini, 1998). The application of biomarkers to elder mistreatment assessment could be an area for possible future research. A recent volume addresses many aspects of applying biomarker acquisition to population surveys (National Research Council, 2000b). CONCLUSIONS AND RECOMMENDATIONS 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 ascer-
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America tainment 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. Efforts to improve research on incidence and prevalence must move ahead deliberately while new instruments and measures are being developed. As noted in Chapter 2, measurement of elder mistreatment has been hampered by a lack of well-validated and reliable instruments. Several instruments have been used in elder mistreatment research, but little more than face validity supports the assumption that they provide valid or reliable measures of elder mistreatment, and further instrument development is needed. As an example, one of the most frequently used instruments in elder mistreatment research, the Conflict Tactics Scale, has generally been accepted on the basis of its proven usefulness in other studies on violence in the family. However, its overall reliability for identifying physical mistreatment in older adults has not been adequately established. Other instruments that have been used in research were developed principally as clinical screening tools. While they have shown their adequacy in clinical situations, it is unclear whether they are fully valid measures for defining abuse and neglect in population or other research contexts, and whether they can be reliably administered in different research settings. In the absence of fully validated instruments that are usable across settings and types of research, it will be difficult to make effective comparisons across studies, either in relation to incidence and prevalence or in relation to risk factors. With a set of common instruments that are valid and reliable, as well as criteria matched across instruments, it becomes possible for useful cross-study comparisons to be made. Furthermore, with such instruments in place, more rapid progress should be possible in identifying and confirming risk factors. Such instruments must be capable of differentiating among the varying forms of elder mistreatment as well as serving as a composite measure. Both for occurrence studies and risk factor studies, specificity for the various types of elder mistreatment is critical. 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 other national surveys of aging populations. Acquiring valid national elder mistreatment occurrence rates is critically needed for improved policy formulation. After appropriate methodological development, a national survey of elder mistreatment occurrence and risk factors, designed to inform important policy issues relevant to elder mistreatment prevention and treatment, should be conducted. The panel recommends a two-pronged approach for obtaining the needed information:
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America Supplemental modules pertaining to elder mistreatment should be included in existing comprehensive geographic health and social surveys, including ongoing longitudinal studies of aging populations. These studies will require the use of short instruments, or a series of questions, designed to identify likely victims of elder mistreatment. For reasons of economy, an alternative is to use these supplemental modules to target only selected forms of mistreatment, such as physical mistreatment, neglect, and financial exploitation. The unique contribution of such studies is to provide a large national sample from which reliable prevalence estimates can be drawn. Of equal importance, however, is the ability to use the longitudinal data to identify risk factors, further define health and social outcomes, and serve relevant policy needs. Elder mistreatment modules appended to existing national surveys can also serve as a test bed for new scientific approaches to data collection. Such piggy-backing of elder mistreatment items and instruments is logistically feasible in most contexts, and attempt should be made to further this application. Once the measurement issues have been satisfactorily addressed, a comprehensive national prevalence study of elder mistreatment should be undertaken. The purpose of this study would be to generate useable national estimates of prevalence and the critical demographics for each of the principal forms of elder mistreatment (physical mistreatment, sexual mistreatment, emotional mistreatment, financial exploitation, and neglect). Both the supplemental module studies and the national prevalence study must ultimately address family and nonfamily settings, including nursing homes and the full range of assisted living arrangements and other community-based locations in which vulnerable older persons reside. Without such information, policy makers and program developers have no empirical basis for assessing the needs of elder mistreatment victims or for deciding how much to invest in research and prevention programs. In addition to improved household and geographically referent sampling techniques, new methods of sampling and identifying elder mistreatment 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 incomplete to some degree because of difficulty in gaining access to those households 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, institutions, or the health care system. Research is needed on the phenomenology and clinical course of elder mistreatment. The clinical course, antecedents, and outcomes of the
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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America various types of elder mistreatment occurrence are poorly understood, necessitating more longitudinal investigations, including follow-up studies of the clinical, social, and psychological outcomes of elder mistreatment cases detected. The existing research appears to lack depth and texture. This is not surprising in light of the field’s early stage of development and the emphasis thus far placed on occurrence of cases (in population-based surveys and in the clinical setting). If the field is to move forward, attention must be devoted to theory-driven efforts to identify the intersecting behaviors, relationships, and conditions that characterize mistreatment and to trace its clinical course. Longitudinal studies are needed to explore the relationship among different forms of mistreatment, to place descriptive information about risk factors in context, to trace outcomes, to draw causal inferences, and to identify potential targets for intervention. For example, what are the individual and familial outcomes of elder mistreatment? What proportion of mistreatment cases result in emergency department visits? To what extent do persons who experience elder mistreatment develop post-traumatic stress disorder or other psychiatric conditions? Many elder mistreatment situations are recurrent and may have various incarnations over long periods, making the definition of an elder mistreatment “event” difficult to define. Thus, further work on the nature, periodicity, variation, and triggers for elder mistreatment is needed and will require longitudinal investigations. Such longitudinal studies could be enhanced by linkage of medical and social records, when feasible, to augment the range of available information. The occurrence of elder mistreatment in institutional settings, including 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 community-based elder mistreatment detection, and considerable innovation may be required.
Representative terms from entire chapter: