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Self-injurious behavior in older adults with intellectual disabilities.

Improved life expectancy for people with intellectual disabilities (IDs), defined as significant limitation in intellectual functioning and adaptive behavior skills (American Psychiatric Association, 2000; Schalock et al., 2010), has resulted in greater numbers of individuals experiencing older age (Fisher & Kettl, 2005). In recent decades, the substantial increase in life expectancy for people with IDs has resulted in those with mild IDs (approximately 85 percent of the population with IDs) approaching near parity with the general population (Bittles et al., 2002). Even people with moderate or severe IDs who often have more medically complex conditions are now enjoying longevity into their mid-sixties or late fifties, respectively (Bittles et al., 2002). These developments result from progressive changes in institutional and residential settings, improvements in medical care, assistive technology, and public health programs (Fisher & Kettl, 2005; Long & Kavarian, 2008). The overall outcome is a substantially increased population of older adults with IDs, but knowledge of their specific age-related issues by professionals and researchers has lagged behind these changes (Perkins & Moran, 2010).

Though older adults with IDs experience chronic health conditions similar to those of older adults without IDs (for example, diabetes), they are also predisposed to a higher prevalence of pre-existing and age-related health issues (Cooper, 1997a; Haverman et al., 2010; Krahn, Hammond, & Turner, 2006; World Health Organization [WHO], 2000). Aging with IDs increases the risk of visual and hearing impairments, thyroid abnormalities, cardiovascular disease, osteoporosis, and osteoarthritis, along with other chronic health issues (for example, poor dental health, obesity, epilepsy, skin conditions, and gastrointestinal problems) that occur with higher prevalence than in the general population (Cooper, 1997a; Haverman et al., 2010; Krahn et al., 2006; WHO, 2000). Other age-related risks are cognitive decline and dementia; diminished adaptive abilities; and late-onset mental health problems, such as affective disorders, anxiety disorders, and phobias (Matson, Cooper, Malone, & Moskow, 2008; Myrbakk & yon Tetzchner, 2008).

In concert with the general population as well as increasing age, issues regarding work and retirement changes, loss and bereavement, and reduced social support can also occur. These issues can magnify in the population with IDs, who may require lifelong support (from formal and informal caregivers) to meet their daily living needs. Challenging or problem behaviors (that is, self-injurious behavior [S1B], aggression, and stereotypy) can often arise from mental health problems or as a result of medical morbidity, developmental difficulties, or socioenvironmental stressors (American Psychiatric Association, 2000; Davidson et al., 2003; Emerson, 1995; Hams, 2010).

Self-injury in the population without IDs is viewed as a broad class of both suicidal and nonsuicidal SIBs (for example, skin cutting with a razor; Nock & Favazza, 2009). However, people with IDs exhibit stereotypic nonsuicidal self-injury (Nock & Favazza, 2009). Thus, researchers and clinicians alike consider the population with IDs who exhibit SIB to be very distinct from the population without IDs who exhibit SIB (Nock, 2010; Ristic, 2005; Schroeder, Oster-Granite, & Thompson, 2002).

Despite the fact that SIB can appear at anytime across the life span, coupled with the increasingly greater numbers of older adults with IDs, there has been little consideration of age-related issues and risk factors of SIB. This article will first describe SIB in individuals with IDs, including a review of theories and general factors associated with its manifestation. Key issues and aging-related risks specifically relating to older adults with IDs (that is, physical and mental health issues, socio-environmental stressors, and negative life events) that may cause or result in self-injury are discussed. Implications and recommendations for social work practice will also be highlighted.

WHAT IS SIB?

SIB in people with IDs is a nonsuicidal, repetitive, and deliberate condition whereby an individual causes physical injury, tissue damage, or both to his or her body (American Psychiatric Association, 2000; Harris, 2010; Nock & Favazza, 2009). Compared with the general population, individuals with IDs are more likely to develop SIB, which tends to accelerate in frequency and intensity as the severity of ID increases (Oliver, Murphy, & Corbett, 1987; Rojahn & Esbensen, 2002). Furthermore, SIB is often considered one of the most difficult issues encountered when supporting people with IDs. The behavior typically develops during childhood, and in many individuals it will persist across the life span (Crocker et al., 2006; Emerson et al., 1997; Oliver, Hall, & Murphy, 2005).

SIB severity does vary and can be conceptualized by its topography, which commonly includes self-biting, head-to-object banging, head striking or slapping, skin picking, self-scratching, and self-cutting (Emerson, 1995). Other forms are hair pulling, ear and eye gouging, stuffing fingers in body orifices, pica (ingestion of nonnutritive objects), and teeth grinding (Emerson et al., 2001; Schroeder, 1991). SIB can result in permanent tissue damage, scarring, ulcerations, and infections from open wounds (Hyman, Fisher, Mercugliano, & Cataldo, 1990). In rare cases, damage can be so severe as to cause detached retinas and blindness (Hyman et al., 1990).

Why Does SIB Occur?

There are several explanations as to why self-injury manifests, including operant theory, a response to pain or discomfort, social learning theory, and pain analgesia/opiate theory (Iwata et al., 1994; Nock, 2009).

Operant Theory. Behavior analysts believe that SIB is caused by operant mechanisms, in which the behavior is shaped by its environment and reinforcing consequences and operationalized by its function (that is, to gain attention, attain tangible objects, or seek self-stimulation [that is, positive reinforcers], escape or avoid tasks and routines, or communicate pain or other stressors [that is, negative reinforcers]) (Carr & Smith, 1995; Claes & Vandereycken, 2007; Emerson, 1995; Iwata et al., 1994; Nock, 2009; Peine et al., 1995). Thus, SIB may sometimes occur for seemingly innocuous reasons (for example, to express dislike of a particular food or drink, or being prevented by another person from sitting in a favorite armchair), but the individual has never learned to communicate his or her preferences in an alternative manner (Iwata et al., 1994).

Pain/Discomfort Response. SIB appearing as an outward expression of pain occurs more often in those with limited expressive/verbal communication skills (Breau et al., 2003). There has been evidence linking SIB as a response to episodic medical conditions such as gastroesophageal reflux disease, sleep deprivation, menstrual periods, and otitis media (Matson et al., 2008). In this instance, the individual exhibits SIB or increased severity of SIB in response to the discomfort they feel (Matson et al., 2008). Sometimes, the frequency, intensity, and target of SIB may directly indicate the location of pain. For example, head banging may suggest pain from sinus infections, headaches, toothaches, or hallucinations; gouging body openings may indicate pain or discomfort in that area (Powers, 2005). However, SIB might also occur away from the actual area causing pain and discomfort (Breau et al., 2003).

Social Learning Theory. Social learning theory assumes that SIB is the result of what has been learned by watching others (Nock, 2010). In this context, SIB has become a learned response, developed at some point across the life span of an individual and incorporated into the person's behavioral repertoire (Oliver et al., 2005; Singh et al., 2004). In this instance, a person may have observed another individual who exhibited SIB to avoid a task or activity or to gain the attention of others. The person observing this subsequently displays a similar behavior in the hope of receiving the same result. It may also arise as an empathetic learned response to other individuals' problem behavior or an expression of distress, frustration, and/or anxiety.

Pain Analgesia/Opiate Theory. SIB can arise and be maintained by dysregulation of neurotransmitters, resulting in heightened blood serotonin levels, release of endogenous opiates, or decrease in dopaminergic function (Nock, 2009; Symons & Thompson, 1997). Thus, SIB may serve a sensory arousal or self-stimulatory function to regulate pain and/or affect, or actually produce feelings of euphoria (Cataldo & Harris, 1982; Villalba & Harrington, 2003). Clearly, there are numerous reasons why a person might exhibit SIB, and in most cases, there may be a combination of causes that initially produces the behavior.

Adverse Effects on Quality of Life

Engaging in SIB, whatever its cause, can sometimes be extremely distressing to the individual and his or her caregivers as well as negatively impact an individual's quality of life. SIB can cause serious personal physical injury and other adverse outcomes such as harmful effects from physical and/or chemical (that is, pharmacological) restraints; social isolation; restricted community participation; restricted vocational and educational opportunities; and, in more severe cases, continued placement in more restrictive living situations (Emerson, 1995; Kahng, Iwata, & Lewin, 2002). Coping with SIB can cause considerable psychosocial stress for families and caregivers, particularly when the SIB causes regular physical harm, and SIB can even prompt an out-of-home placement (Cooper et al., 2009; Emerson, 1995; Mossman, Hastings, & Brown, 2002). Furthermore, against a backdrop of increasing fiscal constraints, formal service providers face increasingly limited financial means and staffing resources to enable quality supports for individuals who exhibit SIB (Matson et al., 2008). This situation can be further exacerbated when SIB is frequent, intense, and causes emotional distress to others (Matson et al., 2008). SIB can engender feelings of considerable anguish in the presenting individual and feelings of helplessness in others.

GENERAL CHARACTERISTICS ASSOCIATED WITH SIB

There is considerable literature describing various characteristics related to SIB in persons with IDs. However, there is wide variability in the reporting data due to varying methods of data collection, different study samples and cohort sizes, and assorted methodologies to assess the operant and severity of the various types of SIB (Cooper, 1997b; Crocker et al., 2006; Nock, 2010; Symons, Sperry, Dropik, & Bodfish, 2005). General characteristics of individuals with IDs who are at risk or predisposed to the condition's development and continuation include communication difficulties (especially in those whose receptive skills exceed their expressive abilities), sensory disabilities, presence of seizure disorders, severe social impairments, and a long history of institutional living (Gardner & Sovner, 1994; MacLean, Stone, & Brown, 1994; Thompson & Caruso, 2002).

Prevalence across Age and Gender

In a large cross-sectional study of 3,124 individuals with IDs, SIB prevalence for people 18 to 29 years of age was 22 percent, 30 to 39 years was 28.4 percent, 40 to 49 years was 26.6 percent, 50 to 59 years was 20.2 percent, and 60 years or more was 19.2 percent (Crocker et al., 2006). Although prevalence of SIB appears to reduce slightly in older adulthood, it is often a lifelong condition. Regarding gender, some studies have reported a higher incidence of self-injury in male than in female study participants (Emerson et al., 2001; Harris, 2010). Other studies have reported that prevalence of self-injury is independent of gender (for example, Holden & Gitlesen, 2006).

Residential Setting

The occurrence of SIB is also linked to residential setting. For example, Schroeder (1991) reported the prevalence of SIB at 7 percent to 50 percent in larger residential centers and 2 percent to 5 percent in smaller community-based settings. Schroeder attributed the lower prevalence in smaller facilities to their inability to manage severe behaviors and stated that individuals who exhibit SIB were referred more often to larger centers where there is a more comprehensive ability to manage the condition. Hams (2010) countered the assumption that smaller settings are unable to manage SIB and asserted that the lower prevalence observed in smaller facilities merely reflects the availability of greater supports and individualized treatment.

Saloviita (2000) also reported a similarly high prevalence rate of self-injury (40.6 percent) in large institutions. The author observed that longer residence in larger settings was associated with increased frequency of SIB. In addition, Saloviita noted that within the 40.6 percent prevalence rate, 27.1 percent exhibited SIB occasionally, and 13.5 percent were frequent self-injurers. Borthwick-Duffy (1994) cited social learning theory to explain that larger institutional settings create an environment that stimulates learned destructive behavior whereby SIB is learned and copied by others.

Though it appears that SIB is likely to be encountered more frequently in more restricted residential facilities, it can and does manifest in individuals across a range of residential settings (for example, those who live with family members, those living in supported independent living situations, and residents of group homes).

Level of Intellectual Functioning

Greater frequency and severity of SIB is also reportedly associated with lower levels of intellectual functioning (that is, people with severe and profound ID); (Emerson et al., 1997; Saloviita, 2000). Emerson et al. (1997) noted that SIB was more prevalent in people with severe or profound IDs as a result of limited mobility, fewer self-care and adaptive skills, and poor communication skills. Borthwick-Duffy (1994) also reported that increasing communication deficits and inability to express needs were factors associated with lower IQ levels, and people with more severe intellectual impairments often exhibited multiple topographies of self-injury.

Dual Diagnosis

Psychiatric disorders are often associated with the manifestation of SIB in people with IDs (Borthwick-Duffy, 1994). People with Tourette's syndrome, schizophrenia, major depression, bipolar and anxiety disorders, and borderline and obsessive--compulsive personality disorders can exhibit SIB (Matson et al., 2008). In people with IDs, psychiatric illness such as depression, mania, anxiety, and posttraumatic stress disorder may actually intensify SIB (Powers, 2005). The appearance of problem behaviors like SIB might imply the presence of a comorbid psychiatric condition or stressful life situation (Myrbakk & van Tetzchner, 2008). The association of psychopathologies with SIB in individuals with ID may reflect the use of SIB as a coping mechanism for feelings of despair, emotional pain, and low self-esteem (Myrbakk & van Tetzchner, 2008).

Genetic Conditions and Developmental Disabilities

People with certain genetic syndromes have an apparent predisposition for developing SIB; in some cases (for example, people with Lesch-Nyhan syndrome), it can be a cardinal characteristic. These genetic syndromes often have specific topographies of SIB. For example, individuals with Lesch-Nyhan syndrome can engage in severe hand, lip, and tongue biting; those with Rett syndrome display characteristic hand-wringing behavior; those with Prader-Willi syndrome often engage in frequent skin picking; and those with Smith-Magenis, Cornelia de Lange, and fragile X syndromes, may exhibit other forms of SIB (Bodfish, 2007; Dominick, Davis, Lainhart, Tager-Flusberg, & Folstein, 2007; Dykens, Cassidy, & King, 1999, Emerson et al., 1997). However, SIB manifests across the full range of etiologies of IDs, and also occurs in individuals for whom the cause of their ID is unknown. Furthermore, individuals with autism spectrum disorder--a pervasive developmental disability (who may or may not have intellectual disabilities)--can also exhibit SIB (Matson et al., 2008).

TREATMENT OF SIB

The two most common approaches for treating SIB are behavioral and pharmacological. Applied behavior analysis, particularly after a thorough functional analysis to assess what prompts and maintains SIB, has been noted to be particularly effective (Hastings & Noone, 2005). This approach relies on direct observation to determine the ABC's--the antecedent (what occurs immediately before the behavior), the behavior itself, and the consequences of the behavior. In fact, Iwata et al. (1994) reported that the function of SIB can be determined in as many as 70 percent of individuals. Behavioral therapy is mostly used to change the antecedents, the consequences, or both (Iwata et al., 1994). This intervention can equip the presenting individual with alternative and more appropriate ways to express his or her choices and dislikes, especially if the behavior represents a communicative function (Iwata et al., 1994).

According to the Association for Professional Behavior Analysts (APBA) (2009), some individuals can exhibit SIB so severe that restraint procedures become essential for minimizing the risk of harm. Mechanical restraints might be used, including splints that restrict the range of motion of an arm, or mitts that help reduce the impact of hitting oneself with a bare fist (APBA, 2009). Protective headgear may be worn to prevent injury from head banging or head slapping, though restraint can also refer to when another person restricts the individual from self-injury, for example, by holding down wrists to prevent self-slapping (APBA, 2009). The APBA emphasizes that such interventions should be used only after less restrictive interventions have failed, and that they are a component of a carefully designed and consistently implemented behavioral intervention plan.

Pharmacological treatment is also used to manage SIB. Psychotropic drugs such as antipsychotics and anticonvulsants have been long used, often in combination with behavioral management interventions (Powers, 2005). However, the use of medication rather than behavioral therapy sometimes occurs for reasons of cost savings, deficiency of technically skilled staff, and limited access to behaviorally trained professionals (Matson et al., 2000). However, there is conflicting evidence regarding the effectiveness of psychotropic drugs used to specifically treat the occurrence and severity of SIB. Some studies have noted the efficacy of resperidone and clozapine to reduce SIB severity in individuals with IDs (Cohen, Ihrig, Lott, & Kerrick, 1998; Hammock, Levine, & Schroeder, 2001). Conversely, others reported the ineffectiveness of those same medications (and other atypical antipsychotics) in reducing SIB (Ruedrich et al., 2008). Opioid receptor antagonists, such as naltrex-one, have also been used successfully (Symons, Thompson, & Rodriguez, 2004).

SIB IN OLDER ADULTS

WHO (2000) stated that behavioral disorders (for example, SIB) in older (50 years or more) people with IDs were associated with biological disorders, mental health conditions, and socio-environmental stressors. Thus, the importance of appropriate physical and mental health surveillance, as well as due regard to potential socio-environmental stressors and negative life events, becomes even more critical in detecting the function of SIB in older adults, particularly when there is an apparent change in the condition's frequency, severity, and topography.

Changing Health Status

In a population already vulnerable as a result of age-related health conditions (as detailed earlier in this article), along with associated secondary health conditions that result from having an ID, it is imperative that health issues are appropriately monitored and treated as individuals with IDs age. A notable study undertaken by Peine et al. (1995) underscores this need. They identified and treated the medical conditions of 10 older people with IDs over the course of one year. The individuals lived in an intermediate care facility and exhibited undefined problem behaviors. The medical conditions identified included seborrheic dermatitis, eczema and rashes, constipation, diarrhea, headaches, stomachaches, abdominal distress (that is, esophagitis and ulcers), mouth sores, sinus problems, allergies, dry eyes, seizure disorders, lacerations, amenorrhea, and arthritis. A 73 percent decline in aberrant behaviors (including SIB) was noted after identification and treatment of medical condition. Another study by Janicki et al. (2002) examined the health status and health service utilization in 1,371 older adults with IDs living in group homes. They found that psychiatric and behavioral disorders declined with increasing age but observed a heightened incidence of problem behaviors (topography not defined), which they posited was related to psychopathologies and sensory deficits. Another large-scale cross-sectional study of health status suggested that poor health may increase the likelihood of persistent behavioral disturbances in older persons with IDs, and that such behavioral disturbances often indicated undiagnosed medical morbidity in older persons with IDs (Davidson et al., 2003).

Other comorbidities apparent across the life span (and reportedly associated with SIB manifestation) include vision and hearing impairments, communication difficulties, sleeplessness, restricted mobility, severe epilepsy, poor self-care abilities, and incontinence (Emerson et al., 1997; Schroeder, 1991). As the prevalence of these comorbidities increases or further progresses in older adulthood, SIB may result as a new occurrence or become more intense. Furthermore, the development of age-associated chronic health issues such as diabetes, cancer, heart disease, arthritis, respiratory diseases, and dementia can present bewildering and somewhat disturbing symptoms in an older adult with IDs (which may be expressed through self-injury), particularly among those with limited ability to comprehend their health condition. Indeed, treatment of new medical conditions may also expose older adults to an array of unfamiliar medical procedures that they may find distressing (for example, insulin injections, chemotherapy and radiation treatments for cancer). Decrements in functional abilities that occur with normal aging, along with changes in mobility and dexterity, can also be equally disturbing to an individual who may have difficulty understanding why such changes are taking place. Therefore, functional limitations in later life caused by changes in physical health and mobility may also result in SIB as an expression of not only pain or discomfort, but also fear and frustration from declining abilities.

Clearly, with increasing age, health issues need to be properly monitored and treated when SIB occurs or intensifies. Prompt attention and thorough physical examination are needed to determine whether the underlying cause of SIB may be the onset of a physical illness.

Socioenvironmental Stressors and Negative Life Events

Socioenvironmental stressors associated with behavioral disorders include social isolation; unanticipated relocation; and separation from or loss of a friend, parent or relative (WHO, 2000). Myriad negative life events can occur with increasing age. Like the general population, individuals with IDs will lose friends and loved ones. Grief and bereavement in such individuals may be further exacerbated by a limited understanding about the concept of death. Another negative life event may be a change in employment status or individuals' usual daily activity schedule. The transition to retirement, including changes in support and financial status, can adversely affect the ability to participate in daily living activities. These issues can potentially trigger an SIB reaction. In addition, changes in residence (especially after losing a family caregiver and in some cases the family home), which may entail an abrupt, first-time move into a staffed residential setting or new home with other relatives, can prompt a self-injurious reaction.

Another stressor may be difficulty coping with the changing health status of one's family or friends (for example, a family member who develops dementia or has a stroke). In this case, an individual may experience frustration with the changing communication abilities and dynamics of the relationship. Individuals with IDs who live in staffed residential settings will also at some time face the retirement or resignation of their favorite support professionals. Though most of the foregoing may occur to any person at any time in his or her life, increasing age in people with ID can bring heightened risk of experiencing more of these types of losses. Frustration, anger, and grief, as experienced on their own or in combination as a result of negative life-changing events, may be expressed through SIB.

IMPLICATIONS FOR SOCIAL WORK PRACTICE

Social workers may work specifically in the field of intellectual--developmental disability service systems, or in generic social service agencies (Parish & Lutwick, 2005). It has long been noted that there is increasing likelihood of social workers encountering older adults with IDs within health care settings and social service agencies (Kaufman, 1990). Social workers in this area of practice can have diverse responsibilities and often have a major role in assessment, coordination of care, counseling, and negotiation of needed services (Parish & Lutwick, 2005; Robinson, Dauenhauer, Bishop, & Baxter, 2012). Beyond the individual, social workers often serve the family system in coordinating respite care, facilitating sibling or caregiver support groups and providing family counseling sessions (Heller, Caldwell, & Factor, 2007; Kropf & Malone, 2004. The importance of the role of advocacy by social workers in the field of IDs is recognized for being particularly prominent (Bigby & Frawley, 2010; Parish & Lutwick, 2005). Recognizing and treating SIB in older adults with IDs is certainly a challenge that draws on all the skills that social work practitioners possess to intervene and advocate appropriately. Likewise, it is important for agencies to provide proper training and educational supports to prepare social workers with the skill sets to understand and manage older people with IDs who exhibit SIB.

SIB can be, without doubt, a significant problem for people with IDs and their caregivers. As discussed, an older adult with an ID may have a long-standing history of self-injury or develop entirely new SIBs with increasing age, each as a result of some positive or negative reinforcing operant (that is, to seek attention, self-stimulation, avoid or escape tasks, or communicate pain or discomfort). Against a backdrop of shrinking budgets and reduced access to behavior support services, social workers need to be aware of the many sporadic, episodic, and aging-related chronic health issues that may escape detection and diagnosis. In some instances, SIB might be the only form of expression available to indicate pain or discomfort caused by an acute or age-related health condition. But there are also myriad other environmental, emotional, and social factors that may be associated with increasing age whereby the appearance of a new SIB may be a response to significant life transitions (for example, retirement, relocation, and bereavement).

While applied behavior analysis examines the function of self-injury and subsequent replacement behavior and psychology focuses on the person's mental status and behavioral outcome, social work practice can implement a systems-based theoretical approach that considers the interplay of biopsychosocial factors (as described in this article) to determine the cause of SIB. Indeed, social workers often have the unique perspective of the "bigger picture" that helps them to make connections between the individuals' personal and social circumstances (Logan & Chung, 2001). Social workers may be involved with assessment, individual and/or family counseling, ascertainment of family dynamics and environmental changes, and coordination of care. Thus, their careful vigilance, scrutiny, and recognition of new patterns and potential causes of SIB are often essential. Moreover, the social worker may be the staunchest advocate for ensuring that appropriate behavioral, environmental, or pharmacological interventions are implemented on the basis of this knowledge.

Unfortunately, there is the possibility that self-injury will persist despite active intervention. However, an individual's age should never preclude new attempts to treat SIB, particularly when quality of life, social relationships, and community participation are jeopardized. This idea is especially true when the condition prompts relocation to a more restricted residential setting that may have been avoided.

There is no doubt that more and more social workers will encounter greater numbers of older adults with IDs in their caseloads. This will include people with more severe and profound levels of ID, who are more likely to exhibit SIB. This article serves to orient social workers to have greater familiarity, insight, and practical knowledge for understanding and managing this complex phenomenon across the life span.

doi: 10.1093/sw/swt018

Original manuscript received September 16, 2011

Final revision received June 2, 2012

Accepted July 9, 2012

Advance Access Publications June 10, 2013

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Richard S. Glaesser, MSW, is a doctoral student, School of Social Work, College of Behavioral and Community Sciences, University of South Florida, 13301 Bruce B Downs Boulevard, MHC 1400, Tampa, FL 33612; e-mail: rglaesse@mail.usf.edu. Elizabeth A. Perkins, PhD, RNMH, is associate director and research assistant professor, Florida Center for Inclusive Communities, Department of Child and Family Studies, College of Behavioral and Community Sciences, University of South Florida, Tampa.
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