Carmel Bitondo Dyer MD
Lucia Kim MD
ESSENTIALS OF DIAGNOSIS
Elder mistreatment is a complex phenomenon and a major public health issue. It comprises neglect, abuse, and financial exploitation. Epidemiological studies reveal prevalence rates of 1.3-5.4%. However, many of these studies were based on self-reporting and, therefore, may underrepresent the actual prevalence rate. The National Elder Abuse Incidence Study estimated that at least one-half million community-dwelling elders were abused or neglected or experienced self-neglect during 1996. This study revealed that almost 80% of cases of elder abuse, neglect, and self-neglect were unreported. Lack of awareness (especially among health care professionals), social isolation, and the elderly person's fear of threatening the relationship with the caregiver and feeling that there is nowhere else to go, that nothing can be done to help, or of shame in admitting abuse by one's own family are some barriers to reporting elder mistreatment. Two or more types of mistreatment often coexist, and evidence of mistreatment is not always clear-cut. Regardless of the type of mistreatment, family members comprise a large portion of the mistreaters.
Nursing home residents have all the same risk factors for mistreatment as community-dwelling elders and are often so cognitively impaired that they cannot report abuse. They are also frequently physically impaired and cannot defend themselves. Multiple reports describe nursing home abuse. The 1998 compilation of complaints received by the State Long-Term Care Ombudsman program (whose aim is to “identify, investigate, and resolve individual and systems level complaints” that affect residents in nursing homes and residential care facilities) and its parent agency, the Administration on Aging, found that, nationwide, physical abuse was 1 of the 5 most frequent complaints in nursing homes. Ten percent, or ~20,000, of the complaints received by ombudsmen during fiscal year 1998 were about abuse, gross neglect, or exploitation, whereas another 5% related to financial abuse and misappropriation of property. Ombudsmen reported >1700 cases of sexual abuse of nursing home residents during a 2-year period. Because the number of people in nursing homes is increasing, the number of abuse cases in nursing homes will undoubtedly increase as well.
Huber R et al: Data from long-term care ombudsman programs in six states: the implications of collecting resident demographics. Gerontologist 2001;41:61. [PMID: 11220816]
Administration on Aging: Long-Term Care Ombudsmen Report for Fiscal Year 1998: http://www.aoa.dhhs.gov/ltcombudsman/98report/98finalreport.html
Neglect is the failure of a caregiver to provide adequately for the needs of the elder. Neglect is the most common form of elder mistreatment, representing almost 70% of all cases of mistreatment in the United States. Neglect can be committed by a caregiver and can be unintentional, if the caregiver is unaware of the needs of the elder, or intentional, if the caregiver willfully fails to provide care. Self-neglect occurs when the
older person is unable to perform basic daily tasks of self-care as a result of mental or physical impairment. Diogenes syndrome is a term used to describe situations in which an elderly person lives in squalor and isolation, refusing help from the outside world.
Abuse can be physical, psychological, or sexual. Physical abuse includes hitting, pinching, kicking, and inappropriate use of restraints. Psychological abuse includes verbal aggression or making threats, which lead to emotional distress. Physical, sexual, and psychological abuse can be a part of intimate partner violence or spousal abuse.
Exploitation occurs when resources of an elderly person are used illegally or improperly for monetary or personal gain. The clinician must determine whether there is an explicit agreement between the patient and caregiver when money or property is being exchanged. Many elders who are lonely or who have functional but not mental limitations may knowingly enter into agreements in which personal care or friendship is traded for money, goods, or property. In other circumstances, perpetrators use undue influence by gaining a victim's confidence and then systematically isolating the victim from family and friends. These perpetrators then have the elder transfer assets into their possession. Financial exploitation when the patient has the capacity to understand the consequences of his or her actions is theft.
Comijs HC et al: Elder abuse in the community: prevalence and consequences. J Am Geriatr Soc 1998;46:885. [PMID: 9670877]
Pavlik VN et al: Quantifying the problem of abuse and neglect in adults-analysis of a statewide database. J Am Geriatr Soc 2001;49:45. [PMID: 11207841]
Pillemer K, Finkelhor D: The prevalence of elder abuse: A random survey. Gerontologist 1998;28:51. [PMID: 3342992]
Department of Health and Human Services, Administration on Aging: http://www.aoa.gov/eldfam/elder_rights/elder_abuse/elder_ abuse.asp
If the presence of elder mistreatment seems likely based on screening, the clinician should look for specific clinical findings. Although seemingly obvious, these findings can be missed if the clinician is not mindful of the possible diagnosis. Red flags for possible elder mistreatment are presented in Table 40-1.
The clinician should observe the patient-caregiver interaction. A mistreated elder may display behavioral problems. The caregiver may be outwardly hostile toward the patient or the health care provider.
Table 40-1. Red flags for possible elder mistreatment.
A unifying feature of abuse, neglect, and exploitation is a state of vulnerability. This vulnerability appears to be largely due to neuropsychiatric disease, which is seen in a significant percentage of mistreated elders. The most common neuropsychiatric diagnoses include dementia, depression, psychosis, and alcohol abuse. These disorders limit the patient's ability to care for self and can lead to a failure to fulfill major role or societal obligations. Abuse of substances such as prescription medication or illegal drugs may produce similar consequences. The associated behavior patterns and loss of decision-making capacity resulting in self-neglect place older persons at risk of becoming victims of crime.
signs and symptoms of neglect must be considered in conjunction with the patient's overall health, comorbid conditions, and functional and nutritional status. Pressure ulcers, malnutrition, and dehydration are often signs of caregiver neglect. They can also occur in the absence of neglect as a result of immobility and illness. However, multiple deep pressure ulcers or malnutrition and dehydration, arising in situations in which care should be provided, can be considered clinical findings of neglect.
Patients who neglect themselves often fail to seek medical care. When they do consult a physician, findings include poor hygiene and advanced medical disease. Self-neglecting patients often dress in dirty clothes, bathe infrequently, and have ungroomed, matted hair. Skin infestations from lice, fleas, and scabies are common, as are multiple skin excoriations from scratching.
Comprehensive physical examination should include a thorough skin, oral, and musculoskeletal evaluation. Nutrition and volume status should be assessed through physical examination and laboratory tests.
Evaluation of the home environment is important to assess fully the patient's functional capabilities. Visiting nurses, adult protective services (APS) specialists, and medical teams that make house calls can perform in-home assessments. These professionals can make observations about patient-caregiver interaction, food supplies, and the upkeep and cleanliness of the home. In-home assessments reveal information about the ability of the patient to perform activities of daily living beyond what can be learned during an office visit.
Dyer CB et al: The high prevalence of depression and dementia in elder abuse and neglect. J Am Geriatr Soc 2000;48:205. [PMID: 10682951]
Potential risk factors that pertain to the elderly victim include advanced age, female gender, poverty, cognitive or functional impairment (especially recent decline), minority ethnic or racial group, and depression. Risk factors pertaining to caregivers include depression, external stress such as sudden change in economic status, alcohol and other substance abuse, history of violence, and dependency on the elder for finances or housing. Although some elders are at higher risk for mistreatment, it is important to note that elder mistreatment can happen to any elder regardless of age, gender, and race or socioeconomic status.
Screening for elder mistreatment is essential, particularly in older persons who are cognitively impaired or unwilling to file a report. Elders are often reluctant to reveal abusive situations because they may feel humiliated or responsible. They may be afraid of threatening their relationship with the caregiver. They may be averse to pressing charges against their own family members. One study noted that 72% of elder abuse victims did not complain of the abuse at the time of presentation to an emergency center. The American Medical Association (AMA) recommends screening of geriatric patients if physical signs are present regardless of whether they complain of abuse. Screening for elder mistreatment should be a part of the routine health assessment for all older persons and part of comprehensive geriatric assessment.
Ideally, the health care provider has developed good rapport and is trusted by the elderly patient before addressing the issue of mistreatment. Patients and caregivers must be interviewed separately. One may start with general statements regarding safety in the house and with caregiving concerns. Direct questions must then be asked regarding abuse, neglect, and exploitation, using plain language in an unintimidating, nonconfrontational, and nonjudgmental manner (Table 40-2). If injury or harm has occurred, one must determine the frequency, severity, and location. A detailed social history must be obtained, including living arrangement, family composition, nonfamily member support, and socioeconomic status. This information will be helpful in formulating the management options.
Table 40-2. Direct questions about mistreatment
Numerous types of screening tools relevant to elder abuse and neglect exist, but most professionals collect information on the observations of others and assess risk factors. If the screening test suggests abuse, tools for performing a more comprehensive assessment for victims of elder mistreatment are available.
In some settings, such as the emergency room, comprehensive screening procedures cannot be performed because of time limitations. Instead, a single question or a 3-question screen can be used:
Fulmer T et al: Abuse of the elderly: screening and detection. J Emerg Nurs 1984;10:131. [PMID: 6374226]
Jones J et al: Emergency department protocol for the diagnosis and evaluation of geriatric abuse. Ann Emerg Med 1988;17:1006. [PMID: 3177986]
Many of the clinical features of elder mistreatment can be confused with the physical examination changes seen with normal aging.
Skin tears are lacerations seen commonly in nonabused elderly persons and occur most frequently on the forearms and occasionally on the legs. Persons usually have no more than 1-2 skin tears at a time, and skin tears often heal completely without scarring.
Ecchymoses often occur more frequently and resolve much more slowly in older persons than in younger persons and can last for months instead of the usual 1-2 weeks.
The bones of older persons are thinner and less dense, making them more susceptible to fractures as the result of bone disease or injury. Metabolic bone disease, osteoporosis and all its causes, such as chronic steroid use, osteomalacia, and Paget's disease, and cancer that invades bone make the bones more brittle. The 2 types of bone fractures known to occur spontaneously are vertebral fractures in osteoporotic older women and hip fractures.
Both smell and taste decline with age, resulting in decreased appetite. Many patients with cancer will lose weight regardless of efforts to maintain nutritional status. Poor health, including poor dentition, depression, dementia, and malabsorption syndromes, also may contribute to weight loss and undernutrition. Numerous other disorders can lead to malnutrition, including stroke, Parkinson's disease, amyotrophic lateral sclerosis, and disorders of the esophagus.
The elderly are much more prone to dehydration with minimal provocation than younger people. Dehydration is a common reason for emergency department visits by older persons. The elderly have decreased body water reserves and thirst drive; their thirst drive may remain depressed even after 12-24 h of water deprivation. The central nervous system regulation of water is altered; although antidiuretic hormone (ADH) is secreted properly in response to volume depletion, the older kidney responds less well to changes in ADH and continues to excrete water in the face of dehydration. Hydration is particularly difficult to monitor in older persons, who can experience very rapid changes in their fluid status without much in the way of symptomatology.
Pressure ulcers most often occur in medically ill or cognitively impaired individuals. Intrinsic causes such as acute illness, neurological disease, peripheral vascular disease, incontinence, and poor nutritional status place individuals at higher risk. Although poor nutrition is a risk factor, improving nutritional status does not always reverse or prevent the process despite good care. Pressure ulcers may take weeks to months to heal depending on the underlying comorbidities and the extent of the lesions.
F inucane TE et al: Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999;282:1365. [PMID: 10527184]
In situations of physical abuse, any of the sequelae of blunt trauma can be seen, such as broken bones, peritoneal bleeding, and organ injury as well as subdural hematomas or intracranial bleeding with head injury. Acute illnesses such as delirium, diabetic ketoacidosis, and sepsis are commonly seen in neglected elders. Because of a lack of usual medical care, neglected patients often suffer from untreated chronic illness, such as uncontrolled diabetes or hypertension, which can lead to
stroke and extensive functional limitations. Neglected patients who have i nsect infestations may have superinfected areas of skin excoriation. Pressure ulcers, malnutrition, and burns are other clinical findings that can be complications of neglect.
Elder mistreatment is a complex medical problem that involves the domains of health, function, and social support and thus requires intervention on multiple levels.
There are no data regarding interventions in nursing home abuse. Clinicians need to understand the principles of good geriatric medical care, recognize mistreatment when it occurs, report it in accordance with the laws of each jurisdiction, and work with the facility staff to help correct problems.
When reporting, physicians need only to provide basic demographic data, information about the nature of the mistreatment, and the demographics and names of other parties, including the alleged perpetrator, if applicable. Mistreatment that occurs in facilities such as nursing homes is handled separately in some states, and physicians should know the laws and responsible agencies in their states. The National Center on Elder Abuse web site has a complete listing of reporting laws and the telephone numbers to call for each state.
Elder mistreatment is often a chronic problem, and the patient should be referred to a physician or medical team with whom he or she can have an ongoing relationship. Elder mistreatment presents special difficulties for the patient in terms of function, decision-making capacity, and health and social support. These interrelated problems are best handled by a team of professionals from medicine, law, and social services. Geriatricians are skilled in the recognition of geriatric syndromes and are often very familiar with local agencies that could provide service to the mistreated elderly patient. Comprehensive geriatric assessment and intervention may be the ideal intervention for vulnerable abused or neglected elders.
If geriatric consultation is not available, developing a relationship with other health professionals and local agencies will be necessary to make the appropriate referrals for elder mistreatment patients. It is often helpful to discharge the patient to home with as many services as possible. Home health agencies can provide in-home assessments by social workers or nurses. Other referral sources include drug and alcohol rehabilitation services, homemaker services, and legal assistance or advocacy groups.
The determination of neglect versus poor choices hinges on an elder's capacity to participate in his or her own care. There are no easily administered standard tools that assess capacity. The gold standard is psychiatric interview, which is a process that takes time and requires a specialist, rendering it impractical in more urgent circumstances. If geriatric or psychiatric consultation is not available, the clinician should be sure that the patient understands the risks and benefits of any decisions that impact his or her health or living situation.
APS or some similar entity provides social intervention in almost every jurisdiction in the United States. APS specialists usually receive reports, conduct investigations, and coordinate social interventions. They elicit input from collateral sources such as friends and family members of the patient and consult with other social workers, physicians, and nurses. After the APS specialists complete the investigation and comprehensive in-home assessment of the patient's situation, they develop service plans to resolve mistreatment issues and other problems they have identified. They work closely with victims, families, and other involved parties. Their goal is to ensure that service is the least restrictive alternative, reflects the patient's preferences, and maximizes independence. When a patient has the capacity to make informed decisions, the APS specialists advocate for the right to refuse services if the individual does not want intervention. As advocates of a legal jurisdiction, APS specialists are bound by statutory limitation and may not impose services such as medical care if the patient is capable of making decisions.
Laws differ from state to state, but in general law enforcement is involved in cases in which crimes are committed against the elderly, such as physical abuse, neglect with malicious intent, and financial exploitation. Police officers investigate cases, looking for evidence to help prosecutors pursue perpetrators. Officers of the court and judges participate in guardianship hearings when appropriate. Members of law enforcement and the legal profession help link older persons with agencies and other resources available to victims of crime. Forensic pathologists work closely with law enforcement officers to determine the cause of death in cases of suspected homicide resulting from abuse or neglect.
Dyer CB et al: Elder neglect: a collaboration between a geriatrics assessment team and adult protective services. South Med J 1999;92:242. [PMID: 10071677]
Little is known about the natural history of mistreated elders. However, studies have shown that there is an increased mortality associated with physical abuse, caregiver neglect, and self-neglect; each is an independent risk factor. Elderly victims of mistreatment and self-neglect have significantly higher mortality than nonmistreated elders.
Lachs MS et al: The mortality of elder mistreatment. JAMA 1998;280:428. [PMID: 9701077]
American Medical Association: Diagnostic and treatment guidelines on elder abuse and neglect. American Medical Association, 1992.
Aravanis SC et al: Diagnostic and treatment guidelines on elder abuse and neglect. Arch Fam Med 1993;2:371. [PMID: 8130916]
Elder Justice Roundtable Report: Medical forensic issues concerning abuse and neglect. The U.S. Department of Justice medical forensic roundtable discussion: http://www.ojp.usdoj.gov/nij/elderjust
National Center on Elder Abuse: http://www.elderabusecenter.org