The term elder mistreatment (EM) as defined by the National Research Council in its report on elder mistreatment 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 elder’s basic needs or to protect the elder from harm.” The authors of the American Medical Association (AMA) Diagnostic and Treatment Guidelines on Elder Abuse and Neglect describe EM as acts of omission or commission that result in harm or threatened harm to the health or welfare of an older adult. EM is a syndrome that may manifest itself in a variety of ways. It may take the form of physical abuse, emotional abuse, intentional or unintentional neglect, financial exploitation, or abandonment, or it may be a combination of these. Research suggests that the national incidence of EM is approximately 450,000 annually, with a prevalence range of 700,000 to 1.2 million older adults, accounting for approximately 4% of those aged 65 years or older. Given these estimates, routine screening for EM is an appropriate part of primary care for elderly people.
Research conducted in the context of a longitudinal aging cohort study sought to determine the mortality of EM. In a pooled logistic regression analysis that adjusted for demographics, chronic disease, functional status, social networks, cognitive status, and depressive symptoms, the risk of death was found to remain elevated for cohort members experiencing either EM or self-neglect. To date, no intervention studies have evaluated the impact of screening on health outcomes, and such studies are needed. However, screening for EM appears warranted, given the findings of case studies and longitudinal studies that document risk factors, as well as the information in the databases from the adult protective services organizations across the country.
Risk factors for EM are known to include poverty, dependency of the elderly person for caregiving needs, age, race, functional disability, frailty, and cognitive impairment. Some factors may really be proxies for other variables. For example, lower socioeconomic status is often associated with fewer resources to meet caregiving demands.
Frail, debilitated older persons may need a level of care that at times exceeds caregiver ability. In particular, the demented person who exhibits disturbing behaviors, such as hitting, spitting, or screaming, poses immense challenges to caregivers. Caregiver stress may give way to any of the forms of EM, and a careful assessment of caregiver stress may identify opportunities to prevent EM. Table 12.1 lists factors that indicate a risk for the development of inadequate or abusive caregiving.
An interdisciplinary approach to assessment and care planning is optimal. Comprehensive interdisciplinary geriatric assessment (see Assessment) that includes the physical, psychosocial, and financial domains of the older adult should detect potential or any alleged EM.
The EM history, provided by both the older person and caregiver(s), is conducted in privacy so that the patient and the caregiver(s) can speak freely and frankly. Studies suggest that the different cultures of racial and ethnic groups define abuse and neglect very differently; thus, cultural sensitivity is important (see Cultural Aspects of Care). The older patient or caregiver from a different culture than the clinician’s may be offended by some EM screening questions. Carefully worded EM questions will avoid alienating the patient or caregiver and closing down any further opportunity to help the patient and family.
If the patient’s responses to EM questions indicate that mistreatment may be occurring, progressively focused follow-up questions are indicated. For example, the clinician might first ask, “Is there any difficult behavior in your family you would like to tell me about?” If the answer is positive, the questions to follow then might be, “Has anyone tried to hurt or hit you?” “Has anyone made you do things that you did not want to do?” “Has anyone taken your things?” Obtaining such information requires clinical interviewing skills similar to those needed when asking about sexual orientation, alcoholism, or substance abuse.
Private interviews with caregivers may detect not only abusive or neglectful behavior but also signs of stress, isolation, or depression in the caregiver, in which case help for the caregiver can also be provided. Caregivers may be reluctant to discuss their own problems in the presence of the person who depends on their care. Because caregivers may range from registered professionals to well-intended neighbors, it is important to know and to document the level of skill the caregiver has, as well as his or her understanding of the situation. The caregiver’s level of understanding is an essential factor for evaluating the intentionality underlying any mistreatment of a dependent older person. For example, a registered nurse in a nursing home is held to a different level of accountability than a frail spouse providing care in the home setting.
Identification of shortcomings in the patient’s care may be the most elusive aspect of a comprehensive assessment. The symptoms and signs of incomplete, inadequate, or neglectful caregiving may be subtle (eg, when a patient fails to do as well as expected on a given regimen) or attributable to the patient’s physical or emotional disorders (eg, weight loss in a patient with a history of depression).
Effective assessment is that which detects EM without directing undue suspicion on well-meaning caregivers or undermining a family’s ability to care for an elderly person with appropriate support and counseling.
Examples of symptoms and signs that indicate a particularly high level of risk for EM are listed in Table 12.2. A number of assessment instruments have been developed in order to help clinicians screen for and assess EM, though none have been fully validated yet, and research is ongoing.
Key signs of mistreatment are physical indicators that are incongruent with the patient’s history; examples are bruises and welts in unusual places or in various stages of healing. Bilateral bruises on the upper torso are rarely the result of falls and warrant follow-up. Other indications of possible EM include frequent, unexplained, or inconsistently explained falls and injuries, multiple emergency department visits, delays in seeking treatment, inconsistent follow-up, or constant switching among doctors. The clinician needs to search for unusual patterns or marks, such as bruises on inner arms or thighs; cigarette, rope, chain, or chemical burns; lacerations and abrasions on the face, lips, and eyes; or marks occurring in areas of the body usually covered by clothes. The presence of head injuries, hair loss, or hemorrhages beneath the scalp as a consequence of hair pulling are significant markers. Cachectic states may be the result of malnutrition that is a consequence of neglect. Unusual discharges, bruising, bleeding, or trauma around the genitalia or rectum raise concern of possible sexual abuse, prompting gynecologic and rectal examination.
The behavior of the patient when in the presence of the suspected abuser may be significant. An EM victim may avoid eye contact, or dart his or her eyes continuously. He or she may sit a distance away from an abusive caregiver, cringe, back off, or startle easily as if expecting to be struck. The caregiver may be nervous and fearful, or quiet and passive. The patient may defer excessively to the caregiver, who may invariably answer for the patient or even try not to allow a private interview with or examination of the patient. Dubious explanations may be given to explain the patient’s injuries.
The emergency department is an important setting for EM assessment. The emergency department may see elderly persons in crisis, and every effort should be made not to simply treat and release patients whose situation merits further assessment. Astute emergency personnel can identify cases where there may be serious safety problems in the caregiving situation.
EM is not invariably or entirely physical. Psychologic abuse or neglect is generally more difficult than outright physical abuse to detect and confirm, but it can be equally dangerous to the dependent older person. The behavior of both the patient and the caregiver may provide important clues about the quality of their relationship and of the care the older person is receiving. Factors that suggest a poor or deteriorating social and emotional situation are an important focus of assessment for EM.
Psychologic abuse includes taunting, name-calling, the promotion of regressive behaviors by infantilization, making painful jokes at the expense of the patient, or other activities that are demeaning. The caregiver’s style of communication will provide important clues. Impatience, irritability, and demeaning statements may indicate a pattern of verbal abuse. However, psychologic neglect or mistreatment by the caregiver may take more subtle forms. For example, failing to provide social or emotional stimulation, or restricting or preventing the patient’s normal activities may result in the patient’s total social isolation.
The patient’s demeanor and emotional status may suggest the presence of psychologic neglect or abuse. For example, ambivalence or high levels of anxiety, fearfulness, or anger toward the caregiver indicate the need for further assessment. Unexpected depression or uncharacteristic withdrawal also merits follow-up. Other high-risk behaviors include lack of adherence with treatment recommendations, frequent requests for sedating medication, or frequently canceled appointments.
Cognitive impairment, dementia, and depression have been shown to be prevalent in older adults referred for evaluation for possible EM. It is therefore appropriate to check any older adult presenting with cognitive impairment, dementia, or depression for symptoms and signs of neglect or mistreatment. Aggressive behaviors associated with dementia may trigger abusive responses in caregivers. (See also Behavioral Problems in Dementia.)
Financial mistreatment includes unauthorized use of the older adult’s funds, possessions, or property. Fiscal neglect consists of the failure to use the older adult’s funds and resources for his or her needs. Signs that the elderly patient is being mistreated financially include:
For some elderly persons, especially those who live in isolation or who choose to accept and endure mistreatment, self-neglect may be an issue. Successful management in such cases will require an assessment of the patient’s capacity to understand the risks and benefits of the situation, as well as consequences of allowing circumstances to persist. (See sections on decisional capacity in Legal and Ethical Issues.) These are complex situations, but the patient’s right to autonomy and self-determination must be honored. Paternalistic viewpoints regarding what the older person “should” do need to be avoided. In self-neglect cases, the clinician may need support when coming to terms with the requirement to respect the decisionally capable older person’s wishes when this involves his or her choosing to continue in an abusive or neglectful situation. (The clinical dilemma resembles that confronting clinicians who treat battered women.) Intervention contrary to the decisionally capable patient’s choice is generally inappropriate, although this may be uncomfortable for the clinician. (See also the section on autonomy versus protectionism in Legal and Ethical Issues.)
The relationship of the older person with caregivers can be very complex, and dysfunctional relations between a dependent older person and a caregiver may not be the fault entirely of the caregiver. To approach such situations with the idea that the older person is inevitably the victim infantilizes the person and is unfair to caregivers. Situations in which elderly persons are mistreated can be arrayed along a spectrum from victimization to mutual abusiveness to relationships where the older person can be viewed as a witting cause of the mistreatment. Moreover, there are cases where the older person and his or her caregivers are making the best of a tragic situation.
To determine the best possible approach for ameliorating if not solving a dysfunctional caregiving relationship, the clinician makes every effort to determine the facts in the situation and fathom the motives of the people involved. Consultation with social workers, psychologists, or psychiatrists may be useful. Legal reporting requirements are not limited in any way by these considerations. If an elderly man hits his son and the son strikes back, clinicians in most states are required to report the latter hitting.
EM in the setting of home care by family or friends has been the focus of much of the discussion so far, but detecting and intervening to prevent EM in the institutional setting is also important. Several factors in this setting could aggravate the problem, including poor working conditions, low salaries, inadequate staff training and supervision resulting in poor motivation, and prejudiced attitudes. Disruptive or insulting behavior by the older adult may also be a factor; resident behaviors can at times be provocative.
The Omnibus Budget Reconciliation Act of 1987 set a new standard for care in nursing homes. (See Nursing-Home Care.) The clinician who is alert to the possibility of abuse and neglect in any institutional setting plays an important role in protecting vulnerable older patients. Equally important is the clinician’s readiness to use the resources available through the institution itself or through state regulatory agencies to investigate and intervene, where appropriate. In cases of suspected institutional EM, the challenge is to balance the rights of staff members with the rights of patients. State departments of public health are usually responsible for investigating nursing-home abuse and neglect cases.
The clinician who suspects EM can use the following questions to guide intervention:
Successful intervention in cases of EM can become complex. Among the factors governing the clinician’s course of action are these:
Procedures and interventions are laid out in two algorithms developed under AMA auspices (see the AMA guidelines listed in the references at the end of this chapter). Both algorithms take into account the issues highlighted above, especially the patient’s safety, willingness to accept help, and capacity to understand and cooperate with the health care team.
Local resources in support of interventions for EM vary, but information is readily available. (See, eg, resources listed in the Appendix.) Consultation with the social work staff of the hospital, nursing home, or local health department may be a useful early step. Each state’s Adult Protective Services (APS) will yield relevant information as well as direct assistance. In addition, the AMA Web site also provides a convenient starting point in the search for information and resources (http://www.ama-assn.org), as does the National Center on Elder Abuse (http://www.elderabusecenter.org).
It is important to know state laws applicable to cases of EM; 46 states have a reporting mechanism for EM, either through APS or state agencies associated with aging. Clinicians need to be familiar with the reporting mandates that apply in their area. In some states, neglect by others must be reported, but reports of self-neglect are not required. Adult children can be charged with neglect of the elderly parent if a caregiving relationship can be proven and it can also be proven that care has been precipitously withdrawn without substitute services. In states where self-neglect is reportable, this is usually the largest intake category. Finally, states may mandate reports for self-neglect but may not provide any services unless the older adult agrees to accept them.
Clinicians are in a key position to assess and report suspected EM, and most states require such reporting. Although clinicians are appropriately wary of acting precipitously, they should be willing to enlist the help of government agencies and the courts when EM is clearly dangerous for an elderly patient. Penalties may be assessed against a nonreporter in some regions. Reports of EM are confidential, and, as is the case with child abuse reporting, the clinical reporter is protected from litigation unless it can be proven that the report was made maliciously. The home page for the National Center on Elder Abuse (cited above) provides one means for reporting information; in addition, published articles include tables that review all 50 states and the procedures expected in each (see the resources listed in the Appendix). The AMA guidelines also provide clinical algorithms for reporting suspected EM cases.
Especially when a case is to be reported, photographs and body charts may be required to document the findings on physical examination. Risk management personnel can provide guidance in documentation and assist the clinician when evidence suggests that there may be a need for police or court action. In any case where the clinician is called to court to discuss his or her findings, documentation is an important part of testimony. EM cases are often extremely complicated, and it is likely that experts in several fields will need to work with clinicians and administrators to avoid under- or over-reporting of EM and to provide the best outcomes for the victims of EM.
■ Aravanis SC, Adelman RD, Breckman R, et al. Diagnostic and Treatment Guidelines on Elder Abuse and Neglect. Chicago, IL: American Medical Association; 1992.
The purpose of these guidelines is to sensitize clinicians to elder mistreatment. The guidelines present what is known about elder mistreatment and its clinical manifestations and history, and they describe the barriers to properly identify and manage elder mistreatment. The authors outline an approach that the clinician can use to recognize elder mistreatment in various clinical settings, and they identify strategies for its management and prevention. They also discuss ethical, medical, and legal issues in detecting and reporting elder mistreatment. The guidelines are available online at http://www.ama-assn.org.
■ Dyer CB, Pavlik VN, Murphy KP, et al. The high prevalence of depression and dementia in elder abuse or neglect. J Am Geriatr Soc. 2000;48(2):205–208.
There is little information in the literature concerning the clinical profile of mistreated older people. The authors’ objective was to describe the characteristics of abused or neglected patients and to compare the prevalence of depression and dementia in neglected patients with that of patients referred for other reasons. This is a case-control study with 47 older persons referred for neglect and 97 referred for other reasons. Using standard geriatric assessment tools, the authors found a statistically significant higher prevalence of depression (62% versus 12%) and dementia (51% versus 30%) in victims of self-neglect than in patients referred for other reasons. This was the first study using primary data that highlighted a high prevalence of depression as well as dementia in mistreated older people. Their findings indicate that it would be appropriate for clinicians to screen for neglect or abuse in their depressed or demented elderly patients.
■ Fulmer T, Guadagno L, Bitondo Dyer C, et al. Progress in elder abuse screening and assessment instruments. J Am Geriatr Soc. 2004;52(2):297–304.
This article reviews existing elder mistreatment screening and assessment instruments and analyzes their strengths and weaknesses. It is a comprehensive review with important clinical suggestions for assessment, depending on time and setting limitations. The information provided is useful for clinicians, teachers, and researchers.
■ Lachs MS, Williams CS, O’Brien S, et al. The mortality of elder mistreatment. JAMA. 1998;280(5):428–432.
Although elder mistreatment is suspected to be life threatening in some instances, little is known about the survival of elderly persons who have been mistreated. The authors observed a group of community-dwelling older adults with at least 9 years of follow-up. The study included 2812 community-dwelling adults who were older than 65 years in 1982, a subset of whom were referred to protective services for elderly persons. Their main outcome measure was an all-cause mortality among elderly persons for whom protective services were used for corroborated elder mistreatment (elder abuse, neglect, or exploitation), or elderly persons for whom protective services were used for self-neglect. In the first 9 years after the beginning of the study, 176 cohort members were seen by elderly protective services for verified allegations; 10 (5.7%) of these were for abuse, 30 (17.0%) for neglect, 8 (4.5%) for exploitation, and 128 (72.7%) for self-neglect. At the end of a 13-year follow-up period, group members seen for elder mistreatment at any time during the follow-up were found to have poorer survival (9%) than either those seen for self-neglect (17%) or other noninvestigated group members (40%) (P < .001). In a pooled logistic regression that adjusted for demographic characteristics, chronic diseases, functional status, social networks, cognitive status, and depressive symptoms, the risk of death remained elevated for cohort members experiencing either elder mistreatment (odds ratio, 3.1; 95% confidence interval, 1.4 to 6.7) or self-neglect (odds ratio, 1.7; 95% confidence interval, 1.2 to 2.5), when it was compared with that of other members of the cohort. The authors concluded that reported and corroborated elder mistreatment and self-neglect are associated with shorter survival after adjustments for other factors associated with increased mortality in older adults.
■ National Center on Elder Abuse at The American Public Human Services Association (Formerly the American Public Welfare Association) in Collaboration with Westat, Inc. The National Elder Abuse Incidence Study; Final Report: September 1998. Washington, DC: National Aging Information Center; 1998.
The National Elder Abuse Incidence Study research provides, for the first time, a national incidence estimate of elder abuse, which can serve as a baseline for future research and service interventions in this critical problem. Its findings confirm some widely held theories about elder abuse and neglect, notably, that officially reported cases of abuse are only a partial measure of a much larger, unidentified problem. The best national estimate is that a total of 449,924 elderly persons aged 60 and over experienced abuse or neglect, or both, in domestic settings in 1996. Of this total, 16% were reported to and substantiated by Adult Protective Services (APS), but the remaining 84% were not reported to APS. On the basis of these figures, the report concludes that more than five times as many new incidents of abuse and neglect went unreported and were not substantiated by the APS in 1996. The standard error suggests that nationwide, as many as 688,948 or as few as 210,000 elderly persons could have been victims of abuse and or neglect in domestic settings in 1996.
■ National Research Council. Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America. Bonnie RJ, Wallace RB, eds. Washington, DC: National Academies Press; 2003.
This book resulted from the work of the Panel to Review Risk and Prevalence of Elder Abuse and Neglect convened by the National Research Council of the National Academies. It highlights the paucity of research on the subject and documents that fewer than 50 published scientific studies have addressed this problem. Concepts, definitions, and guidelines are presented, along with a new theoretical model for elder mistreatment. Measures and studies of elder mistreatment are catalogued with an analysis of definitions in the context of state laws.
Terry T. Fulmer, PhD, RN