Elder Abuse and Neglect

In order to avoid unnecessary confusion, the panel has developed a research terminology to refer, descriptively, to the behaviors, relationships, interactions, and conditions of scientific interest, reserving the terms “abuse” and “neglect” to refer primarily to the legal category (recognizing that the statutory definitions vary). Box 2-1 presents the panel's glossary of terms. The term being used in this report to encompass the conduct and harmful consequences of scientific interest is “elder mistreatment.” Although “mistreatment” is itself a value-laden term (and is used in some state statutes), the panel has selected it because it appears to have been least used as a statutory category.

BOX 2-1

Glossary of Research Terms.

The panel's definitions of elder mistreatment (and its constituent elements) have been guided entirely by scientific considerations. We have asked: What definitions will be most useful for facilitating advances in knowledge? It bears repeating that whether “mistreatment,” as the panel is defining it, amounts to “abuse” or “neglect” in a legal sense depends on the statutory definitions in a particular jurisdiction, the actor's state of mind, and other factors.

Elder Mistreatment

“Elder mistreatment” is defined in this report to refer 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 elder's basic needs or to protect the elder from harm. “Mistreatment” conveys two ideas: that some injury, deprivation, or dangerous condition has occurred to the elder person and that someone else bears responsibility for causing the condition or failing to prevent it.

Two features of this definition merit emphasis. First, the term “mistreatment” is meant to exclude cases of so-called self-neglect—failure of an older person to satisfy his or her own basic needs and to protect himself or herself from harm. Self-neglect may often be a proper occasion for intervention, at least of a temporary nature—for the purpose of determining whether the elder has the capacities for self-care and, if appropriate, of designating a caregiver, but the panel regards self-neglect as a separate domain of elder protection, not as a component of mistreatment.

Second, elder mistreatment, as defined by the panel, excludes victimization of elders by strangers. In the panel's view, ordinary predatory victimization of elders merits empirical attention as a species of criminal behavior, but it should not be regarded as a component of the distinct domain of elder mistreatment. We say this because the nature of the relationship between the elder and the perpetrator lies at the heart of common understanding of the concept of mistreatment (and in most statutory definitions of abuse and neglect) and therefore should guide the definitions used in empirical research.

Caregiving and Other Trust Relationships

Although we have excluded ordinary victimization by a stranger, thereby narrowing the boundaries of the field, what types of relationships are relevant? In the panel's view, the range of relevant relationships depends on whether the victim's condition was caused by an intentional act (typically causing an injury) or by a failure to satisfy a legal duty of care (leading to unmet needs). If the elder has been injured—we refer here to financial injury as well as physical and emotional injury—or otherwise put at risk by the actor's intentional conduct, the category of relevant relationships includes not only caregivers, but also other family members or even unrelated people (e.g., lawyers) who are aware of the elder's vulnerability and exploit it. The panel uses the phrase “trust relationships” to denote the relevant relationships. Financial exploitation is illustrative: the conduct of interest is exploitation by family members and others who may have assumed fiduciary obligations for elders with diminished capacity for financial decisions. As noted above, however, it does not include exploitation by other predatory parties; these victimizations would amount to legal harms (financial injuries) but not to mistreatment.

By contrast, if the presenting condition relates to the elder's unmet needs, a de facto caregiving relationship (or expectation of care) is required in order to preserve the boundary between neglect by responsible others (mistreatment) and self-neglect. Professionals who are clinicians, such as physicians, nurses, psychologists, or social workers, are de facto in trust relationships with elders for whom they care. In this context, the relevant relationships include only those people who have assumed the responsibility for caregiving or are expected to do so. Obviously this characterization ultimately depends on highly contextual social facts that are not easily ascertained in surveys or observations.

Vulnerability Associated with Aging

Vulnerability is another core concept in elder mistreatment. Its importance can be seen by asking whether intimate partner violence constitutes elder mistreatment simply because the victim is older than a designated age (e.g., 65). In the panel's view, the answer is “no” (although the issues may overlap when the victim is older and vulnerable). A predicate feature of elder mistreatment is that the victim has a diminished capacity for self-care or self-protection. Thus, a chronic pattern of intimate partner violence that has persisted into older age is not, by itself, “elder mistreatment.” Conversely, if violence against an intimate partner is initiated or becomes more frequent or severe due to the older partner's age-associated vulnerability, then it is properly characterized as “elder mistreatment.”

Although vulnerability is a core concept in the definition of elder mistreatment, the panel concluded that further specification would be premature at this time. Some aspects of vulnerability are indisputable, including financial dependence and impairments of mobility (being wheelchair-bound) or cognition (dementia). However, other factors that diminish capacity for self-care or self-protection have not been well characterized. For this reason, the panel regards the meaning of vulnerability as an empirical question—as a referent for the cluster of clinical or psychosocial risk factors associated with increased likelihood of mistreatment. For most research purposes, vulnerability should not be used as a selection criterion; instead, data bearing on vulnerability should be routinely collected and analyzed in most studies of elder mistreatment.

Finally, another boundary issue relates to the age cut off for being an elder. This is a complicated issue. Conceptually speaking, vulnerability, not age, is the determinative concept. There seems to be no important difference (conceptually or morally) between caretaker neglect of a 35-year-old with mental retardation and of a 65-year-old with dementia. So too with financial exploitation and other forms of abuse. Setting children to one side, the relevant population of vulnerable adults includes all persons with impairments or disabilities, such as mental retardation or impairments of capacity for mobility, associated with diminished capacity for self-protection. Not surprisingly, most adult protective services statutes include elder abuse and neglect within the broader category of vulnerable adults. Also, legislation designed to protect institutionalized persons (which includes psychiatric hospitals and mental retardation facilities as well as nursing homes) typically codify the right to be free of “abuse and neglect.”

Having said this, however, the panel recognizes that the categorical channeling of research funding (as well as protective legislation) along the path of aging gives particular salience to vulnerability associated with aging (as opposed to other conditions). The National Institute on Aging has commissioned the panel's study, and a special focus on elders establishes the policy framework within which we are working. Accordingly, within the larger domain of adult protection, this report gives special attention to the aspects of research that focus on people who are vulnerable to mistreatment due to aging. However, this does not mean that “vulnerability associated with aging” should be defined categorically in terms of some particular age cutoff, such as 65. Even for legal purposes, the age of eligibility for benefits tied to older age varies—e.g., 65 for social security, 60 for programs funded under the Older Americans Act, 60 or 65 under adult protective services statutes. (Interestingly, the threshold age of protection under the Age Discrimination in Employment Act is 40.) For research purposes, a category defined as persons 65 or over would be both overinclusive and underinclusive—since many people over 65 are not vulnerable and some younger than 65 are vulnerable due to aging (e.g., dementias). In sum, the panel regards “older age” as one of the risk factors that should be explored empirically under the rubric of “vulnerability associated with aging.” As the field of elder mistreatment develops, surveillance and research must attend specifically to age as well as other indicators of vulnerability. (The panel's conceptual vocabulary is depicted in Figures 2-4 and 2-5.)

FIGURE 2-4

Elder mistreatment and adjacent domains of research and policy.

FIGURE 2-5

Basic elements of elder mistreatment. Explanation C + V + R represent a sequential analysis of the necessary elements of elder mistreaatment (conduct by people in caregiver roles or other trust relationships that injures a vulnerable elder, deprives the (more...)

Older Person

If an age cutoff is to be used, then the operationalization and measurement of who is an older person are straightforward and merit no further discussion. If, however, the definition is broadened to include other groups of vulnerable adults, operational definitions and specific measurement methods may be needed. For example, if the definition is broadened to include “adults with developmental disabilities,” or “adults with mental illness,” or “adults with physical disabilities,” then a definition of each of these terms is necessary for research to go forward, as is a method of determining whether a specific individual meets the definition. It seems fair to assume that definitions and measurements for various types of disabilities exist in the relevant fields and can be imported with appropriate modification to research on elder mistreatment.

The panel favors specific definitions of disability if the population being studied is chosen on this basis, rather than use of a generic and vague category of all “vulnerable adults.” Objective criteria of inclusion, such as cognitive impairment or frailty or disability impairing locomotion, should be used. However, if the study population is defined by age (e.g., everyone over 18 or 40 or 55, etc)., then the elements of vulnerability can be defined empirically according to the personal characteristics that emerge as risk factors for mistreatment.

Trust Relationship

A trust relationship is at the center of research in elder mistreatment. In the simplest terms, such a relationship exists when one party is charged with, or has assumed, the responsibility for caring for or protecting the interests of the older person, or when the relationship (in its social context) creates the expectation of care or protection. There are therefore at least two participants in such a relationship, the elder and the person—or persons—responsible for care or protection or expected to provide care or protection for the elder. Such a relationship may arise formally or informally and may be voluntarily undertaken or imposed by operation of law or social custom.

For example, the relationship may arise from a formal guardianship or a durable power of attorney in which the trusted person agreed to serve in that role in the event of the elder's incapacitation. Even in the absence of any formal designations, the relationship may arise out of kinship or friendship or professional roles. For example, a relative, caregiver, or other person may find himself or herself in the position of making health care or living decisions for the elder without any formal agreement or designation. Furthermore, someone may take on the responsibility to assist the older person in financial matters, such as an accountant, financial adviser, or friend with special knowledge in this area. Under certain circumstances, the existence of a trust relationship may be predicated on the fact that the other person is a health care professional who has taken on the care of the elder, as would happen in a nursing home, assisted living, or hospital with a nursing aide or licensed professional.

Different types of relationships may have different bearings on elder mistreatment, depending on the type of mistreatment. The threshold of involvement that constitutes a trust relationship may vary for physical mistreatment, emotional mistreatment, financial exploitation, or failure to provide needed care. For example, failure to provide needed care (neglect) depends on the existence of a de facto caregiving relationship and therefore would require a narrower range of relationships than the other categories of mistreatment. For example, any family member would be in a trust relationship for purposes of the basic expectation that they will not exploit or harm the vulnerable elder person. However, a family relationship clearly will not always amount to a relationship sufficient to give rise to a caregiver obligation; this is why the panel has distinguished between these two concepts and has defined trust relationships as a broad category that includes, but is not limited to, caregivers.

In some circumstances, of course, existence of a trust relationship is unambiguous and harm caused by the other person would always constitute mistreatment. These include legal guardians and professionals who enter into formal professional relationships with an older person. The case for a legal guardian should be obvious. Similarly, paid professionals, whether they be clinicians, attorneys, financial advisers, or accountants, enter into trust relationships by virtue of their professional activities. It should be apparent that relationships with paid professionals in all health care settings, such as hospitals, nursing homes, assisted living homes, adult day care programs, and the like, enter into trust relationships when they come into contact with older people. This includes not only licensed professionals such as doctors or nurses but also personal care workers (nursing aides), janitorial staff, escort staff, etc.

In other circumstances, whether a particular relationship amounts to a trust relationship for purposes of elder mistreatment research may be unclear. In the first instance, researchers should make every effort to determine the point of view of the older person regarding their trust relationships. In some situations, this may be determinative. However, in many situations, the elder person's point of view will not be ascertainable or will be superseded by social conventions or legal duties. For example, the older person may be suspicious of, and have no expectation of protection from, a home health care aide who has assumed a caregiving obligation. Conversely, the older person may develop a trusting relationship with a door-to-door vacuum cleaner salesman who, by law and social convention, bears no obligation to protect the older person's interests. Accordingly, applying the concept ultimately requires objective assessment and judgment.

In sum, empirical knowledge is lacking about 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. Therefore, an early priority of research in the field ought to be the conceptual and empirical development of different operational definitions of trust relationships.

Conduct of the Other Person in the Trust Relationship

The relevant conduct of the other party that may be of interest includes direct physical contact (hitting, pushing, shoving, etc.), verbal mistreatment (yelling, threatening verbally, criticism, etc.), placing restrictions on the older person (isolating to a room, unnecessary use of physical or chemical restraints), social embarrassment (berating the elder in public), depriving the older person of material possessions (restricting access to money, stealing from the elder, etc.), not providing necessary care (e.g., not providing medications, bathing infrequently, feeding a limited diet), and many more. The challenge for researchers is to define the conduct with maximum possible specificity to facilitate analysis and interpretation. Whether any such conduct amounts to mistreatment requires a value judgment based on context. For example, restricting access to money may be entirely appropriate conduct in caring for a person with dementia. (See further discussion of this point in the section on “mistreatment” below.) As noted earlier in this chapter, however, the most sensible strategy for research is to define the category overinclusively (with reference to the expected definition of mistreatment) for purposes of data collection and measurement and to refine it thereafter in analysis and interpretation.

Measurement of conduct is subject to a number of significant methodological limitations. Briefly, much of this conduct is not observed directly and relies for its detection on report by the elder, by the other party in the trust relationship—who may be the perpetrator of mistreatment—or by a third party, such as a colleague or supervisor of the other party in an institutional setting. Indeed, in the absence of direct observation, conduct is harder to assess than harm, since it may not leave evidence in the form of readily observable physical or emotional consequences, since it may be forgotten by the elder if she is cognitively impaired, since the older person may be reluctant to report the occurrence of such conduct, or since the other person may not report it out of conflict of interest.

The investigator is faced with the difficult task of detecting a “latent variable” requiring a research methodology that optimally employs several modalities of assessment and takes repeated observation. As with assessment of harm, there is a dearth of basic descriptive studies of conduct involved and of measurement methods.

Harm

As already noted, mistreatment (under any consensus definition) will include some types of conduct that have not actually caused harm—perhaps because harm was not intended or because the conduct creates an unacceptable risk of harm. However, many types of mistreatment do involve actual injury or harm, most notably physical assault and financial mistreatment (loss of property). To the extent that the definition includes harm, the measure of harm must be operationalized and measured.

The importance of measuring harm varies according to the type of research being conducted. For example, survey research and other studies in nonclinical settings (or not using clinical or legal records) are likely to focus mainly on the possible perpetrator's conduct; the presence of harm is likely to be ascertained on the basis of a few specific indicators (e.g., “Were you hurt?” “Did you have to go to the hospital?” “Did you lose any money?”) However, in the context of research in clinical settings, such as identification of forensic markers for mistreatment, or development of improved screening tools, the assessment of harm may be a particularly important element of the study.

Pertinent types of harm to older persons include physical injury, emotional injury, and financial harm. Physical harm is the most straightforward, since its presence typically can be assessed reliably through examination, through laboratory tests (e.g., X-rays), or upon forensic assessment. Examples of physical harm include lacerations, burns, fractures, bruises, malnutrition, and others (Dyer et al., in this volume). Similarly, financial harm can typically be assessed reliably if access to the older person's financial records is available. Emotional harm is more difficult to assess. This may take on the form of mental distress and other psychological responses, post-traumatic symptomatology (social withdrawal, reexperiencing traumatic events, trouble sleeping or eating, etc.), or the onset (at times recurrence) of a psychiatric disorder, such as major depression, post-traumatic stress disorder, panic disorder, agoraphobia, among others. Measurement of harm must be able to determine the presence or absence of different consequences in the various domains above. Since many harms may not be anticipated prior to the initiation of the research, the measurement method must be general and flexible so as to detect a wide range of consequences that may be specific to the specific elder-trust relationship, and to the setting involved (home, hospital, long-term care etc.). The measurement method must also evaluate temporal aspects of the consequences (onset, frequency, duration) and quantify the severity of these consequences.

A key methodological issue in the measurement of consequences is that some of the harms involved are not always accessible to direct measurement. This is true for several reasons. First, in many cases, harms are transient and remit by the time an assessment occurs, as in the case of a bruise or a laceration. Second, many older persons who are mistreated are cognitively impaired and cannot recall past harms. Third, many older people are reluctant to report conduct of others who may have harmed them or that may constitute mistreatment out of embarrassment or for other reasons. Fourth, often the only other source of information about past harms may be the other person in the trust relationship, who has a conflict of interest regarding disclosure of the harm. Therefore, the best a researcher can do, as is customary when latent variables are being investigated, is to employ methods of assessment that are multimodal (e.g., self-report, observer report, data review, direct examination, laboratory studies, forensic assessment) and that are repeated with sufficient frequency to minimize the likelihood that relevant consequences are missed. The corollary to this is that measurement methods should include checks and balances so that false positives are minimized as well.

In general, methods to assess the presence or absence of physical injury, emotional disturbance, or financial injury are available and have been adapted to the elder mistreatment context. These methods generally are able to evaluate the presence or absence of injury (harm) and are also able to approach its temporal aspects and severity. The vast majority of measures have focused on the determination of whether elder mistreatment has occurred using a wide range of methods and definitions. Many studies have assessed the occurrence of mistreatment by review of protective agency records, study of sentinel reports (reports of professionals serving older adults), or criminal justice system statistics. These have used typically unstandardized or vague definitions of abuse and neglect, many based on the wording of state statutes, and have significant methodological weakness.

A few researchers have tackled the problem directly, but they have used definitions or measures that have varied from study to study. In some cases, methods have been developed to assess the occurrence of elder abuse using telephone or in-person interviews of family members or proxies or direct assessments of samples of older adults. However, there is a dearth of such measures, and most existing measures have had limited assessment of their measurement characteristics, reliability, or validity. Furthermore, the measures used have almost always been direct adaptations of measures intended for other purposes or for other settings (e.g., the Conflict Tactics Scale was intended to measure interpersonal violence for married couples and was modified by Pillemer and Finkelhor to assess abuse of older people by their caregivers). As well, existing measures are inadequately differentiated or specialized. They do not, for example, distinguish clearly the types of harm they are measuring (physical, emotional, etc.) or differentiate the measures according to whether they are intended to screen for harm, define its occurrence, or measure its severity.

The elder mistreatment field is lacking in descriptive methodological research on how to measure consequences that are related to mistreatment. As Dyer et al. (this volume) note, no studies have carefully described 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 characteristics, and their clinical course. In addition, few studies have compared different approaches to the measurement of harms. The greatest gap relates to psychological consequences of elder mistreatment. This sort of information is key to the ability to develop measures that are methodologically sound. Basic methodological research should also be an early priority in the field.

Mistreatment

Whether certain facts, collected using the methods discussed so far in this chapter, constitute mistreatment is a matter of definition and judgment. The researcher's main goal should be to make the process as transparent as possible. The facts, collected as above, must be assessed against an a priori definition. (The panel's preferred definition is set forth above.) Much of the time, the facts fit the definition with little doubt. In other cases, whether the facts should be characterized as mistreatment requires judgment. Thus the researcher must specify a process for making this determination.

This process works best if it has at least two characteristics. The first is a set of rules or guidelines specifying whether anticipated combinations of circumstances and conduct will constitute one form or another of mistreatment if detected in the field. A different cross-tabulation of conducts and harms is necessary for each type of mistreatment. This is illustrated in Table 2-1.

TABLE 2-1

Cross-Tabulation of Conducts and Harms.

This approach illustrates several issues. While it is not possible to anticipate all combinations of conduct and harms that could be encountered, prior consideration of the types of issues that will come up in the course of the research will help standardize decisions in the conduct of the study. Also, the frequency of harms and conducts must be taken into account in the table. For example, a single instance of pushing an older person down the stairs may constitute mistreatment regardless of whether an injury occurs, whereas forgetting to feed her a meal now and then may not. Furthermore, the absence of both specific conduct and specific harms may, under certain circumstances, constitute mistreatment.

For example, as already mentioned, specific harms that could be due only to mistreatment (such as certain types of fractures) might be classified as mistreatment even if the relevant conduct were not detected. But conduct that has not resulted in any apparent harm may also at times be properly characterized as mistreatment. If a trusted person attempts to push an older person down the stairs but fails to succeed, thus causing no obvious harm, most would agree that this is physical mistreatment. What distinguishes this situation is the intent of the trusted person, so that if there is clear intent to harm, mistreatment may be present even if the harm did not occur.

While intent is important in limited circumstances, it should be kept in mind that intent to harm, which is very hard to determine (even in a courtroom, much less for research purposes), is not a necessary element of the definition of mistreatment, as defined in this report. Of course, when there is intent to harm that can be determined unequivocally, then in all likelihood mistreatment has occurred. While it would be interesting to study the relationship between intent of the trusted person and conduct or harms that constitute mistreatment (and that are characterized as neglect and abuse by social authorities) this is not a core aspect of the measurement of mistreatment.

An important caveat should be added at this point. One of the difficulties in elder mistreatment research so far has been the use of overly inclusive definitions of what constitutes mistreatment. Some writers have included the entire range of harms and conducts in Table 2-1 as mistreatment, including, in some cases, “social embarrassment” that may have been transient, or minor physical injuries that were clearly an accident. It is important for researchers to focus their attention on serious forms of mistreatment and not to define “normal” negative human interactions as pathological. The purpose of the cross tabulation is not to lay out all harms and consequences involved in interactions between an older person and another in a trust relationship; rather it is to limit the definition of elder mistreatment to a specific number of intersecting sets that have been defined by the researcher as plausible forms of mistreatment.

The second part of the assessment of mistreatment is the specification of a process used to apply the definition and guidelines to all cases under study. This process has as its starting point the facts in each case, the definitions of mistreatment being employed in the study, and the rules/ guidelines derived from cross-tabulation of anticipated examples. This information is reviewed by designated individuals using a specified process. Typically, a trained expert looks at each case and decides the simple ones. A consensus panel then reviews the more complex cases, plus a sampling of the simpler ones classified by the individual reviewers. It bears emphasis that this classification is needed only if a dichotomous classification is required by the goals of a particular study. As already noted, the panel encourages study of a broad range of conducts and harms beyond those that could be classified as cases of mistreatment. The presence (or absence) of some of these might be predictive of the onset of mistreatment in the future. Also, even though they may not be mistreatment, some of these could affect the quality of life of the older person. Finally, these may be of interest to social scientists studying the relationship between conduct and consequence in older persons and their caregivers.

Risk and Protective Factors

A major purpose of research in elder mistreatment is to understand its causes so that it can be prevented, treated, or managed effectively. This line of inquiry typically begins with the study of factors that increase (risk) or decrease (protective) the probability that mistreatment will occur. As discussed earlier, it is the panel's view that one of the crucial risk factors involved is the vulnerability of the elder person. More research is needed on risk factors, including vulnerability, and protective factors for mistreatment. This issue is of such significance to the field that Chapter 5 has been devoted to it.