What is known about dementia care recipient violence and aggression against caregivers?

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What Is Known About Dementia Care Recipient Violence and Aggression Against Caregivers? a

Tracy C. Wharton & Bryan K. Ford

b

a

Department of Psychiatry, University of Michigan Medical School, Ann Arbor, Michigan, USA b

Geriatric Research, Education, and Clinical Center, Birmingham VA Medical Center, Birmingham, Alabama, USA Accepted author version posted online: 04 Mar 2014.Published online: 24 Jun 2014.

To cite this article: Tracy C. Wharton & Bryan K. Ford (2014) What Is Known About Dementia Care Recipient Violence and Aggression Against Caregivers?, Journal of Gerontological Social Work, 57:5, 460-477, DOI: 10.1080/01634372.2014.882466 To link to this article: http://dx.doi.org/10.1080/01634372.2014.882466

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Journal of Gerontological Social Work, 57:460–477, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0163-4372 print/1540-4048 online DOI: 10.1080/01634372.2014.882466

What Is Known About Dementia Care Recipient Violence and Aggression Against Caregivers? TRACY C. WHARTON Department of Psychiatry, University of Michigan Medical School, Ann Arbor, Michigan, USA

Downloaded by [141.214.17.222] at 00:52 23 October 2014

BRYAN K. FORD Geriatric Research, Education, and Clinical Center, Birmingham VA Medical Center, Birmingham, Alabama, USA

Aggression is a known behavior in dementia, but there is little in the literature about risk to home-based caregivers in situations where severe aggression is present. This article examines this issue with a focus on what is known and where further research is needed. Rates of severe aggression by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. Measures containing both assessment of behavior and objective measures of caregiver trauma are needed, along with interventions aimed at educating and protecting caregivers while respecting communicative properties of behavior. KEYWORDS dementia, violence, aggression, caregiving, quality of life

Physical aggression is a known behavioral manifestation in dementia patients, and is usually related to identifiable triggers or communication challenges. Despite this well-documented fact, there is not much in the literature about the impact and experience for caregivers (Enmarker, Olson, & Hellzen, 2011; Kunik, Snow, Davila, McNeese, et al., 2010; Mega, Cummings, Fiorello, & Gornbein, 1996; Orengo et al., 2008; Shah, 1995; VandeWeerd, Received 27 July 2013; revised 7 January 2014; accepted 8 January 2014. The opinions and assertions contained in this article are the views of the authors and are not to be construed as official or as reflecting the views of the Veterans Administration. Address correspondence to Tracy C. Wharton, University of Michigan Medical School, Department of Psychiatry, 2800 Plymouth Road, Building 16, Room 200S-1, Ann Arbor, MI 48109, USA. E-mail: [email protected] 460


Violence and Aggression Against Dementia Caregivers

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Paveza, Walsh, & Corvin, 2013). Although there has been some investigation of intervention models in nursing home settings for disruption of violent or severely aggressive behavior by care recipients against nursing home staff, home-based caregiving and physical safety of informal caregivers faced with such behaviors remains largely outside of the purview of the current state of knowledge on this topic. The majority of dementia caregivers are spousal, making this a particularly salient issue for older adults who may be nearly as vulnerable as the people that they care for (Family Caregiving Alliance, 2011; Paveza et al., 1992; VandeWeerd et al., 2013). Although there may be a range of triggers for severe aggression in care recipients, evidence suggests that caregivers may be given little information about causes, or validation about the ongoing traumatic experiences that the caregiving individual may be faced with as they endeavor to keep their loved one at home. Access to interventions addressing these issues may have barriers to participation due to geography or other access-related issues (Li, Kyrouac, McManus, Cranston, & Hughes, 2012; Whitebird et al., 2013). Risk to safety and well-being of both caregivers and care recipients is high in these situations, and the implications for ongoing care of the care recipient are substantial (Li et al., 2012; Morgan et al., 2013). Ryden (1988) explained that “better empirical information regarding the phenomenon is essential as a basis for development of strategies for prevention and management” (p. 343). This appears to remain an issue, as one systematic review published in 2011 (Enmarker et al. 2011), found only 21 published papers on the topic that met medium or high levels of scientific rigor. VandeWeerd et al. (2013) pointed out that accessing populations of dementia care recipients and caregivers is often problematic in research, and thus studies of the place of severe aggression and violence in these families “has been largely understudied. . . . As a result, the ability to study multiple caregiver and care recipient risk factors simultaneously has often been curtailed” (p. 2). Because the majority of dementia caregivers are spouses who themselves tend to be elderly, this violence would meet the criteria for intimate partner violence (IPV), if not for the dementia, and although caregivers are likely to understand that the underlying reasons for the behavior are nothing like IPV, the resulting injuries to the caregiver and potential for trauma and chronic distress remain valid, making this a risk-management issue of great importance. Although there are developing evidence-based models of practice with community-dwelling dementia patients, disruptive and dangerous behaviors can confound the successful implementation of these models, with implications for both quality of care and quality of life for both care recipient and caregiver. This article examines the current state of the literature about home-based dementia caregiving and care recipient severe aggression or violence, identifying the gaps in knowledge, and making suggestions as to the next steps

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for research. Three databases—PubMed, EBSCOhost, and PsychInfo—were searched using keywords related to dementia, aggression, and caregiving. Reference lists of articles were also hand searched, and suggestions from experts in the field were included. Recent and seminal articles were included, to provide a comprehensive view of the literature.


LANGUAGE, DEFINITIONS, AND MEASUREMENT Language used to discuss the issue is problematic. Aggression and violence are value-laden terms, and reliable definitions that recognize the unique situation of dementia sufferers who are responding to stimuli have not been agreed upon in the literature, particularly as aggressive behavior is part of a continuum of behavior exhibited by dementia sufferers throughout the progression of the disease. With most informal dementia caregivers being spousal or adult children, issues of severe aggression and/or violence against caregivers raise questions about definitions of elder abuse, complicating the picture even further. Phillips, deArdon, and Briones (2000) explained that “abuse of caregivers by care recipients does not fit the usual picture of elder abuse, and therefore may not be recognized as either important or prevalent” (p. 124), despite valid issues of physical and emotional risk. Most definitions related to IPV suppose that harm of some kind is “intentionally inflicted” (Brossoie, Roberto, & Barrow, 2012, p. 792), and although there may be some degree of intent in an individual who is suffering from dementia, it is generally agreed that it is defensive or communicative in nature, rather than malicious, resulting from the progression of the disorder and increased cognitive impairment (Bostrom, Squires, Mitchell, Sales, & Estabrooks, 2011; Graneheim, Hornsten, & Isaksson, 2012; VandeWeerd et al., 2013). Previous studies and a number of measurement instruments have enumerated a range of items that should be included in a working definition for severe aggression or violence in these situations, although literature continues to rely heavily on the Ryden (1988) definition: “any physical or verbal behavior that has the effect of harming or repelling others and includes behaviors such as hitting, kicking, and verbal threats” (Morgan et al., 2013, pp. 738–739). Johannesen and LoGiudice (2013) proposed that “two key concepts (across varying definitions) are that (aggression or abuse) involves an act which results in harm to the older person, and that this occurs within a relationship of trust” (p. 292). This definition, however, is not very helpful in consideration of dementia-related behavior, as both harm and trust may be present, alongside the complicated issues of stimuli and communication that are not included in the definition. Bidewell and Chang (2011) explained that “the many definitions lead to many measures, each reflecting its author’s concept” (p. 301). Demonstrating this point are the many scales that have been developed to assess behavioral



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disruption that includes this severe end of the continuum. The most commonly used are the Cohen-Mansfield Agitation Inventory, which contains an aggression subscale of 13 questions concerning behaviors such as spitting, hitting, kicking, biting, etc. (Cohen-Mansfield, 2009), and the Ryden Aggression Scale (Ryden, 1988), which explores “unprovoked deliberately unfriendly or violent behaviors,” physical, and verbal aggression during the previous year. A number of other scales have been used to attempt to measure violence and aggression in dementia care recipients, all assessing some similar domain of symptomatology, albeit from various contextual frameworks such as family conflict, behavioral bother and burden to caregivers, or neuropsychiatric symptoms. These include the Straus Conflict Tactics Scale (Straus, 2007), the Revised Memory and Behavioral Problem Checklist (RMBPC; Teri et al., 1992), the Neuropsychiatric Inventory (Cummings et al., 1994), the BAGS Aggression Scale (Prodger, Hurley, Clarke, & Bauer, 1992), and the Finkel Brief Agitation Rating Scale (Finkl, Lyons, & Anderson, 1993). Although these scales have contributed to the literature discussed in this article, extensive discussion of these scales is outside of the scope of this article, and information about them is available elsewhere. The common variable across these measures is physicality of aggression, although what seems to be missing is a reliable focus on the experience of the caregiver in being aggressed against. Although measures of behavior and measures of burden/stress exist discreetly, there is no measure that captures both extent or level of behavior, and level of potential trauma to the caregiver in a comprehensive fashion. The RMBPC approaches such an attempt, by asking for self-reported caregiver bother in relation to specified behaviors, although even this scale does not attempt any objective measure of trauma or distress related to aggressive behaviors by the person they are caring for. For the purposes of this article, violence or severe aggression is defined as physical aggression or action with successful, attempts at, or threats of harmful physical contact. This includes assault that may result in major or minor injuries, or no injury, and may include being hit, kicked, pinched, shoved, grabbed, or bitten. This may also include believable threats to the caregiver, or physical aggression against property that could induce fear of danger to the caregiver (Enmarker, Olsen, & Hellzen, 2011; Galinsky et al., 2010; Kunik, 1996; Ryden, 1988; Shah, 1995). Note that agitation is not the same as aggression (Hamel et al., 1990). These two concepts are not always clearly separated in the literature, but although agitation generally implies behaviors related to discomfort or confusion, aggression clearly implies hostile physical motion, regardless of the trigger or intent. Physical aggression tends to persist through advanced stages of dementia, once it appears (Brodaty & Low, 2003; Hamel et al., 1990; Wilks, Little, Gough, & Spurlock, 2011), although levels of aggression and frequency of behaviors may vary by type of dementia (for example, Alzheimer’s type versus Fronto-temporal type).

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THE CONTINUUM OF BEHAVIORS IN DEMENTIA Dementia involves a range of challenges, including both medical/cognitive and behavioral issues. Behavioral disruption ranges along a continuum: Mild disruption might include things like repetitive questioning, and moderate to advancing disruption might include wandering or agitation and combativeness during things like meal or bath times; these behaviors may be only mildly disturbing, or may be quite difficult for the caregiver, and provide substantial challenges to providing care. At the extreme of the continuum lie behaviors that can be considered high risk—those behaviors defined earlier as violence or severe aggression for the purposes of this article. These behaviors are unique in that they create a situation of physical vulnerability and risk for the caregiver, and by default put the care recipient at risk through the dyadic dependent relationship. When violence or severe aggression is present in dementia caregiving, the situation is not only complicated to manage (in terms of basic care needs), but may compromise the overall safety of the household, because injury to the caregiver would leave the care recipient in a compromised position, creating a complicated picture of risk management for all stakeholders. Research has shown that the presence of violent or severely aggressive behaviors in a care recipient with dementia leads to a four-fold increase in the risk of reciprocal violence by caregivers (Paveza et al., 1992; VandeWeerd et al., 2013), and may lead to increased burden and distress (Graneheim et al., 2012; Wilks et al., 2011), particularly as caregivers may be facing physical challenges related to their own aging (Phillips et al., 2000). Behavior is communicative for cognitively impaired individuals who may have lost other means of expressing needs. Violent or severely aggressive behavior, however, can have substantial consequences on the quality of care received, the use of chemical or physical restraints, increased caregiving burden, and potential for trauma, as well as the safety and health of the caregiver (Kunik, Snow, Davila, McNeese, et al., 2010; Matsumoto et al., 2007; Orengo et al., 2008).

INCIDENCE RATES OF AGGRESSIVE BEHAVIOR Literature suggests that approximately 90% of dementia patients will develop behavioral disruptions of some kind (Desai & Grossberg, 2001). There is a distinct population of dementia patients who are physically aggressive or violent, although current evidence offers a range, rather than a clearly defined prevalence rate. Shah (1995) estimated between 18% and 35%, and Mega et al. (1996) reported 18–65%; Kunik, Snow, Davila, Steele, et al. (2010) reported 35–64% in community dwelling persons; O’Leary, Jyringi, and Sedler (2005) reported 24% of community dwelling dementia patients.


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Cooper, Selwood, Blanchard, and Livingston (2010) reported that their study (N = 220) found that over 1/3 of family caregivers reported being abused by their care recipient. Most recently, Morgan et al. (2013) wrote that “approximately 40% of patients diagnosed with dementia ultimately exhibit aggressive behavior” (p. 739), resulting from a complex interaction of internal and external environmental factors. This broad range of findings is the result of varying definitions in the literature, and “frequently failing to distinguish between aggression and nonaggressive agitation with the two often combined into a single assessed measure” (Morgan et al, 2013, p. 739). Concerns about prevalence rates are further complicated by likelihood of underreporting, due to social norms disapproving of violence, and potential normalization of disease related behaviors (Hamel et al., 1990).

CORRELATIONAL QUALITIES AND PREMORBID PERSONALITY TRAITS There are interesting data related to correlational issues, particularly whether military service may be related to aggressive behavior in dementia, whether hormone levels may be a factor in presence and management of such behaviors, and whether the presence of premorbid personality traits may predispose violent behavior as the course of dementia progresses. In the case of military veterans, there may be exceptional risks. In a study of newly dementia-diagnosed veterans in 2008, Orengo et al. found that 20% of all participating veterans exhibited aggressive behavior at the baseline screening, somewhat higher than estimates of early stage aggression in the general public (13%). However, Kunik, in an interview on the topic, stated, “There is no aggression gene. There are no absolute indicators in a person’s history that they will develop aggression. It is not directly connected to combat duty or PTSD” (Petersen, 2010). Despite this caution, a recent study led by his team found a tenfold increase in injury rates related to violence by veterans with dementia being cared for in their homes (Kunik, Snow, Davila, McNeese, et al., 2010). Despite these interesting and provocative findings, we were unable to find evidence supporting a direct connection between military experience and aggression in persons with dementia. Ball et al. (2009) found that “98% of veterans were found to have a comorbid Axis I disorder in their lifetime” (p. 1288), and suggested that this comorbidity, along with high-prevalence issues such as traumatic brain injury in veterans, may help explain the relationship between dementia and aggressive behavior more reliably than other alternatives. Further study with this population is clearly warranted. There is some evidence of correlation in the literature between premorbid aggressiveness and violent or severely aggressive behavior in dementia patients. Although these traits are certainly seen in individuals


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who have never exhibited such behaviors, those who engaged in IPV or aggressiveness in relationships earlier in life are more likely than others to exhibit such behaviors once dementia removes social filters for acceptability and communication (Hamel et al., 1990). Chen, Ryden, Feldt, and Savik (2000) hypothesized that the high correlation between aggressive behavior and alienation from family members found in their study may be related to premorbid personality characteristics in this way. Similarly, Ryden (1988) found that approximately 1/4 of study care recipients had premorbid aggressive behaviors that continued as the illness progressed. Although the link between premorbid aggression and violent care recipient behavior is logical, this is not necessarily a prerequisite for the development of such actions. Kunik, Snow, Davila, Steele, et al. (2010) found that, in a study of 215 newly diagnosed dementia patients who had never exhibited aggression or violence previously, 41% developed aggressive behaviors over the course of the 2-year study. Nonetheless, in a 2010 systematic review of the literature, Enmarker, Olsen, and Hellzen (2011) found that although there were “no differences in the character or severity of agitation . . . depending on what type of dementia diagnosis a person had . . . a link between premorbid personality and violent behaviour in people with dementia can be seen” (p. 158). There have been several studies linking testosterone and estrogen levels to aggression levels in elderly men, although the majority of these are small-n studies. Orengo, Kunik, Moinari, Wristers, and Yudofsky (2002) “found levels of testosterone to be positively correlated and levels of estrogen to be negatively correlated with the specific behavior of physical aggression in elderly men with dementia, regardless of the type of dementia” (p. 163), and this correlation was not found for other types or degrees of behavioral disruption. They asserted that, despite thin evidence in the literature, their study and similar case and smaller studies establish a temporal relationship between estrogen treatment and decreased aggressive behavior. They cautioned, however, that “79% of the variance of aggression is unaccounted for in our regression model” (p. 165), and suggest that a range of other factors, such as premorbid personality traits, environmental stimuli, and other medical conditions may be responsible for much of the remaining variance. Research seems to suggest that this correlation is both strong and worthy of continued study (Kyomen, Nobel, & Wei, 1991; Orengo et al., 2002), although a thorough exploration of this topic is both outside of the scope of this paper and outside of our scope of expertise. We mention it here, however, as a promising area of development in the medical and neuropsychiatric literature that could lead to useful and effective interventions. There appears to be no empirical evidence to indicate any predictors related to caregiver demographics or qualities. Evidence suggests that prevalence of aggression does not significantly differ by gender or by type of dementia (O’Leary et al., 2005), although intensity of behaviors and causal reasons may vary, as with behavior-variant fronto-temporal-type dementia.


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It is possible, however, that caregiving coping styles may contribute to ability to manage behaviors at home and influence decisions related to placement (Wilks et al., 2011). Mausbach et al. (2012) suggested that coping mechanisms such as mastery, self-efficacy, and avoidance are related to caregiver burden and depression—factors known to be correlated to placement. Similarly, Sun, Kosberg, Kaufman, and Leeper (2010) pointed out that although positive coping styles can increase overall life satisfaction for caregivers, dysfunctional coping styles, such as denial or avoidance can be problematic, leading to decreased flexibility in response to challenging behaviors.

TRIGGERS FOR SEVERE AGGRESSION AND RELATED ISSUES OF HOMECARE SERVICES There are a number of things that have been correlated in the literature as triggers for severe aggression or violence, including: unidentified need and resulting frustration, pain, reduced vision and/or hearing, changes in the environment, excessive noise or activity, limited privacy or space, and quality of relationship or presence of reciprocal aggression with caregivers (Enmarker et al., 2011; Kunik, Snow, Davila, Steele, et al., 2010; Paveza et al., 1992). Depression may also be related to aggressive behavior (Ball et al., 2009; Enmarker et al., 2011; Kunik, Snow, Davila, McNeese, et al., 2010). O’Leary et al. (2005) found a significant correlation between depression and physical aggression against the caregiver (p < 0.05). To complicate matters, although physical or chemical restraints are frequently used to try to manage behaviors, there is little evidence that restraint of any kind is reliably effective (Brodaty & Low, 2003; Chrzescijanski, Moyle, & Creedy, 2007; Enmarker et al., 2011; Kunik, Snow, Davia, Steele, et al., 2010; Rayner, O’Brien, & Schoenbachler, 2006). Questions have been raised about the ethical implications of medication and restraint use, noting that such methods are the antithesis of person-centered care (Coleman & Medvene, 2013; Graneheim et al., 2012), and some additional cautions in the literature note that some classes of medications may actually increase behavioral disruptions or have considerations related to mortality (Kales et al., 2012; Rayner et al., 2006). Desai and Grossberg (2001) noted that “many patients . . . are often inappropriately prescribed psychotropic medications, which are then inadequately monitored and reviewed, with the potential for serious detrimental consequences” (p. 93). In home-care settings, the impact of severe aggression or violence on caregiving can be significant (Geiger-Brown, Muntaner, McPhaul, Lipscomb, & Trinkoff, 2007). Dangerous aggressive or violent behaviors are sometimes seen in patients who have few other life-threatening or immobilizing illnesses and may be living in the community with caregivers. There is substantial


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evidence supporting aggression as a significant predictor of institutionalization and mortality rates (Brodaty & Low, 2003; Chrzescijanski et al., 2007; Li et al., 2012; Matsumoto et al., 2007; Orengo et al., 2008). O’Leary et al. (2005) stated that “abuse of caregivers is one of the key factors leading to placement of Alzheimer’s patients in residential care facilities” (p. 401). Additionally, there is anecdotal evidence suggesting that although rates of desired placement by caregivers may be high as a result of these challenging and dangerous behaviors, these patients are difficult to place in long-term care (LTC), because they may not need skilled nursing care, despite behavioral problems. As a result, they may have poor quality of life and poor end-of-life care in home environments (M. Malone, personal communication, September 2011; J. Wagner-Felkey, personal communication, August 2011). Chrzescijanski and colleagues (2007) discussed the salience of this issue, noting that “managers of nursing home facilities, including some ‘dementia specific’ units, are often apprehensive about admitting people with challenging behaviours such as aggression” (p. 272). Aggression toward caregivers in home environments can result in injury or trauma to the caregiver and may impact their health outcomes (Cahill & Shapiro, 2008; Graneheim et al., 2012; VandeWeerd et al., 2013). There is some evidence that home healthcare workers are four times more likely to experience assault if they have one or more patients with dementia (Galinsky et al., 2010), and this may lead to significantly shortened home-care visits, impacting on quality of care. In LTC environments, “being subjected to abuse . . . may compromise a workforce’s ability to provide person-centered care” (Scott, Ryan, James, & Mitchell, 2011, p. 111). Evidence suggests that “a majority of providers actually experience acts of violence” (Enmarker et al., 2011, p. 154; see also Irvine et al., 2012). Matsumoto et al. (2007) reported that care-recipient behaviors “may be the most important care recipient variable in terms of their adverse impact on caregiver burden” (p. 220). Caregivers may receive little information about dealing with high-risk behaviors, and although healthcare personnel are trained to ask about elder abuse of vulnerable care-recipients, there is infrequent inquiry into abusive or dangerous behavior toward the caregiver (Cooper et al., 2010; Phillips et al., 2000). Furthermore, it is possible that underreporting of severely aggressive or violent behaviors may be related to normalization within the context of the relationship or understanding of the disease by caregivers (Phillips et al., 2000). VandeWeerd et al. (2013) explained that severe aggression or violence in caregiving situations “results in family distress, impaired life functioning, and cognitive difficulties . . . [and] in emotional difficulties (for caregivers) such as feelings of inadequacy, self-contempt, decreased self-esteem, and depression” (p. 2). Graneheim et al. (2012) reported that caregivers working with violent or aggressive care recipients “were on their guard and easily disgusted by the behaviour . . . they became disappointed and helpless, and felt like failures because they could not manage the behaviour” (p. 159).


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THE KNOWLEDGE BASE ABOUT CAREGIVING INTERVENTIONS There has been a great deal of work done to design and test interventions focused on mitigating caregiver burden. These interventions have ranged from a focus on caregiver wellbeing through meditation or yogic practices to direct behavioral management strategies for dementia-related disruptive behaviors. Although none explicitly address the issue of high-risk behaviors or of risk management and safety issues for home-based caregivers, it is helpful to consider the overall picture of what has been tested and found to have efficacy, as groundwork for future research to expand these ideas into the previously excluded population of families experiencing high risk behaviors. Enmarker et al. (2011), in their systematic review of the literature concerning prevention and management of aggressive and violent behavior in dementia, reported on several strategies used in LTC settings for reducing conflict that showed promise in the literature, including person-centered care that recognizes the humanity, dignity, and individuality of the care recipient and focuses on responding with individualized response (see, for more information, Chrzescijanski et al., 2007; Coleman & Medvene, 2013), personalized and respectful bathing and toileting routines, personalization of patient’s bedrooms, respect for privacy and dignity, and person-centered interactions outside of management of activities of daily living. Effects of these types of interventions were reported to reduce aggression by as much as 60%. Indeed, it has been suggested that “nonpharmacological interventions are the key to management of behavioral disturbances in dementia. The foundation . . . is recognizing that the person with dementia is no longer able to adapt, and that instead the environment must be adapted to the patient’s specific needs” (Desai & Grossberg, 2001, p. 100). Desai and Grossberg (2001) discussed the Progressively Lowered Stress Threshold Model, which aims to decrease behavioral disturbance by adapting environmental stressors in six areas where disruptive behavior may be triggered: fatigue (in the patient); overwhelming stimuli; changes of environment, routine, or caregiver; excessive demand; perception of loss (by the patient); and delirium, although evidence of the success of this model is thin and only described in formal care settings, despite its popularity in nursing literature as a framework for intervention (Rayner et al., 2006). It is notable, however, that this model is consistent with findings from the Enmarker et al. 2011 systematic review, indicating success rates for similar types of intervention. There is some evidence that interventions focused on coping strategies for the caregiver may increase the sense of personal reward and decrease the overall subjective burden of caregiving in this type of situation, although these strategies remain theoretical for caregiving situations with severe aggression or violence present, as these studies generally excluded


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those with behaviors at this end of the continuum. Cooper et al. (2010) reported that “emotion-based coping strategies can mitigate the impact of burden on dementia carers’ mental health” (p. 592). The Resources for Enhancing Alzheimer’s Caregiver Health (REACH) studies (including REACH I and II, REACH VA, and REACH-OUT; Burgio et al., 2009; Gitlin et al., 2003; Wisniewski et al., 2003) included a problem-focused strategy for behavioral management, and evidenced some success with agitation and distressing behavioral problems, as well as increased caregiver self-satisfaction, although violence was not a specific focus of that intervention (Gallagher-Thompson et al., 2003). The REACH program focused on teaching the caregiver to modify behavior by considering the ABCs (antecedent, behavior, and consequence) and learning to adapt their own behavior and/or the environment within this framework. There have been several aggression management interventions designed for professional caregivers, primarily those in LTC settings. Chrzescijanski et al. (2007) described a number of promising educational interventions that they used as a basis for the design of an emotion-based, active-learningoriented staff educational program for addressing aggression. These authors found a direct relationship between staff attitude and management of aggression, and although intensity of aggression did not reduce, frequencies of episodes did. Irvine et al. (2012) found that an Internet-based dementiaaggression training for nursing assistants demonstrated a viable approach that was manageable for workloads, administered with little supervision and high fidelity, using a series of short, interactive modules. This study was an expansion of previous attempts at internet-based trainings for dementia care for nursing assistants (Hobday, Savik, Smith, & Gaugler, 2010; Irvine, Bourgeois, Billow, & Seeley, 2007; MacDonald, Stodel, & Casimiro, 2006; Rosen et al., 2002). Technology-guided care management programs were both successful and cost-effective, and “improvements were noted in all domains, including caregiver education and support, where there is evidence linking provision of such services to delays in institutionalization, and safety” (Vickrey et al., 2006, p. 719). Godwin, Mills, Anderson, and Kunik (2013) described two technologysupported programs for informal dementia caregivers with promising feasibility and access, and promising outcomes: ComputerLink (Beauchamp, Irvine, Seeley, & Johnson, 2005) and Caregiver’s Friend (Bass, McClendon, Brennan, & McCarthy, 1998). ComputerLink involved decision-making support for responding to changing behaviors, electronic educational resources, and a discussion forum. Findings indicated that caregivers felt more confident in decision making, although burden and stress showed little change. Caregiver’s Friend involved text and video messages with positive caregiving strategies. Participants were found to have improvements in stress, strain, anxiety, and depressive symptoms when compared to a control group. Interventions such as these may continue to evolve in feasibility and cost-effectiveness, as technology continues to improve.



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Taken together, interventions such as the ones described here offer hope for progress toward broad dissemination of evidence-based tools for risk management in home-based care settings. Although LTC interventions have been piloted, specifically focused on safety related to severe aggression, interventions for home-based caregivers have focused primarily on coping, burden, and stress, with some associated training in behavioral management for burdensome (though generally nonthreatening) behaviors. Perhaps a viable alternative can be created by combining both approaches, providing detail-oriented safety responses to informal caregivers at the level that is provided to nursing assistants, in addition to burden mitigation. For example, including instruction on how to get free of hair pulling or a human bite, how to deescalate aggression, and when to call in reinforcements, in addition to stress management strategies for caregivers such as the Signal Breath and meditation instruction. Traditional-style support and educational groups that provide opportunities for open communication, validation, and mutual support may hold promise as an intervention for informal caregivers. Although interventions of this type seem to offer an optimistic path forward, there are a few cautions to be noted. It is perhaps worthy of consideration that caregivers may inadvertently be given the message that “if only you could identify the triggers,” behavior might be less dangerous; giving such a message not only fails to validate the experience of the individual on the receiving end of the aggression, but sets up a dynamic where they may self-perceive that they are at fault for their own trauma or injury. Although evidence of this phenomenon in family caregivers is still an open question, Graneheim et al. (2012) found that professional caregivers who experience violence in caring for individuals with dementia “strove to regain control by searching for excuses and searching for support that they seldom found” (p. 159), noting that “they were actually relieved to tell their story about violent behaviour” (p. 160). Liu, Lewis, and Evans (2013) noted that caregivers “are often blamed for the violent actions of residents by their superiors rather than being supported,” and further noted that “the complexity of caring for residents with dementia must be recognized and acknowledged . . . open constructive discussion should be encouraged without assigning blame” (p. 1463).

IMPACT There are a number of salient issues to consider when examining the impact of violent or severely aggressive behavior in dementia-care recipients. Questions of clear definition of the phenomenon may help to provide clearer parameters to a discussion around whether violence by an individual with dementia toward a caregiver should be considered as IPV in the way


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that one might consider such behavior in other contexts. Laws concerning elder abuse reporting exist in all states in the United States, and these must be considered, along with issues of risk management, as healthcare providers attempt to intervene and assist caregivers to balance safety and care needs in dyadic relationships that may involve health and aging concerns for both individuals. The gaps in the research about the experience of home-based family caregivers dealing with severe aggression or violence must be addressed, so that appropriate interventions can be considered. Much of what is known continues to be inferred from the substantial evidence about safety and person-centered responses gathered in nursing home settings, and although this appears to have solid face validity for transfer, the experiences, training, and contexts of professional caregivers and home-based family caregivers are quite different. Consideration of screening by providers for safety issues, and the conceptualizations of aggression within current cultural norms will have implications for prevention and intervention strategies. Such research could be used to inform points of intervention, and what types of interventions might be both effective and feasible with families. If families are not engaged with Area Agencies on Aging or other local support agencies, it is likely that they will not have encountered existing caregiver support programs. The majority of programs developed to date involve either appointments with a specialist or visits to the home, which may be costly or infeasible due to scheduling, risk, or other concerns. Despite potentially low levels of community engagement, dementia patients and their caregivers are seen in an ongoing fashion by healthcare professionals, and it may be that those interactions provide the most optimal chance for providing some kind of intervention. Interventions provided in a healthcare setting may need to be structured differently than some of the evidence-based interventions currently existing for home-based caregivers, with a focus on the need for brief interaction with experts and an emphasis on more flexible structure that includes specific information about safety and validation of caregiver fears, as well as burden. There seems to be support for future research in both case management programs and internet or technology-based models (Family Caregiver Alliance, 2011; Godwin et al., 2013; Vickrey et al., 2006). Professional caregivers noted that access to education and expert support that educated without blaming were crucial to their abilities to successfully deal with severely aggressive or violent care recipients (Bostrom et al., 2011; Graneheim et al., 2012). Such models could potentially be adapted for use with informal caregivers, using either home computers or apps for smart phones or tablet computers. These kinds of technology based models hold great promise for further development.


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