culturally sensitive dementia caregiving models and clinical practice

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ADULTSPAN Journal Spring 2006 Vol. 5 No. 1 25

© 2006 by the American Counseling Association. All rights reserved.

Culturally Sensitive DementiaCaregiving Modelsand Clinical Practice

Andrew P. Daire and Michelle Mitcham-Smith

Family caregiving for individuals with dementia is an increasingly com-plex issue that affects the caregivers’ and care recipients’ physical, mental,and emotional health. This article presents 3 key culturally sensitivecaregiver models along with clinical interventions relevant for mentalhealth counseling professionals.

The role of a caregiver for a family member with dementia and the effect oncaregivers’ emotional and psychological states have been well researched overthe past 30 years (Brody, 1985; Cooke, McNally, Mulligan, Harrison, &Newman, 2001; Daire, 2002, 2004; Fisher & Lieberman, 1994; Litwak &Szelsenyi, 1969; Meshefedjian, McCusker, Bellavance, & Baumgarten, 1998;Myers, 2003). Early research identified the key role family caregivers playedin linking patients with dementia with service providers (Litwak & Szelsenyi,1969). Additionally, research focused not only on how caregivers positivelyaffected the lives of care receivers but also on the accompanying strain anddistress these caregivers experienced (Carradice, Beail, & Shankland, 2003;Fisher & Lieberman, 1994). Family caregivers, the support they provided (orwere not able to provide), and the resulting emotional strain they experi-enced proved to be key factors regarding whether patients with dementiawere institutionalized or whether they remained in the community (Coon,Gallagher-Thompson, & Thompson, 2003). Additionally, family caregiverswho were coping well were found to have a positive effect on the health of thecare recipients. But, what were the emotional costs to the caregiver?

Research has shown that caregiver burden varied significantly depend-ing on the caregiver’s coping skills, support system, physical condition,anxiety level, and the specificity of the stressor (Kneebone & Martin, 2003).The specific situation and the type of stressor also dictated the copingstrategies implemented by the caregiver. Caregiver burden was also associ-

Andrew P. Daire, Counselor Education Program, University of Central Florida; Michelle Mitcham-Smith,Department of Psychological and Social Foundations, Counselor Education, University of South Florida.Correspondence regarding this article should be addressed to Andrew P. Daire, Counselor Education, Uni-versity of Central Florida, PO Box 161250, Orlando, FL 32816-1250 (e-mail: [email protected]).

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26 ADULTSPAN Journal Spring 2006 Vol. 5 No. 1

ated with increased mental health problems such as clinical depression,depressive symptoms, and anxiety (Carradice et al., 2003; Connell, Janevic,& Gallant, 2001; Daire, 2004). In addition, caregiver stress and burdenwere exacerbated as dementia symptoms progressed (Wackerbarth & Johnson,2002). The intricate and subjective burden experienced by caregivers wasinfluenced by several factors, such as the emotional and physical demands,the consequences of such demands, and the elements that govern them(Myers, 2003).

FAMILY CAREGIVING

Families of patients with dementia provided a significant amount of care ina community setting (Brody, 1985; Cooke et al., 2001; Coon et al., 2003;Fisher & Lieberman, 1996). With the cognitive and behavioral challengesassociated with dementia, this proved a challenging responsibility for fami-lies. It also came with a certain degree of emotional and psychological strain.Most families were not emotionally, physically, or financially prepared toembrace the daily challenge of caring for their loved one who had been diag-nosed with dementia. At some point, behavior and physiological issues war-ranted placing that family member in an assisted living facility (e.g., nursinghome, assisted living facility, or respite care). The patient’s deteriorating healthcondition and the severity of the caregiver’s distress usually triggered thedecision to institutionalize the family member with dementia (Levesque,Ducharme, & Lachance, 1999). However, it is important to note that theprimary caregivers of institutionalized patients with dementia also experi-enced significant levels of emotional, physical, and psychological strain (Daire,2002; LoGiudice et al., 1998). Whether it was a spouse, sibling, or child,nearly all caregivers of institutionalized parents with dementia continued toexperience some level of strain or psychological distress (Levesque et al., 1999).

In addition to examining the ill effects on caregivers, previous research-ers paid special attention to the different individuals who provided care,which furthered the understanding of the effect of caregiving on the familysystem (Coon et al., 2003; Daire, 2002; Fisher & Lieberman, 1996; Woods,Niederehe, & Fruge, 1985), its effect on spousal caregivers (Monahan &Hooker, 1995), and the effect on family members who provide care for oneor both parents with dementia (Suitor & Pillemer, 1996; Wackerbarth &Johnson, 2002). One outcome of research on caregivers for individualswith dementia was the development of caregiving models that had rel-evance for the health care practitioners working with this population. Thisresearch has led to the identification of several models, theories, and per-spectives regarding caregiving (Knight et al., 2002; Mui, 1992; Shyu, 2002;Shyu, Archbold, & Imle, 1998). Many of these models proved relevant inaddressing emotional and behavioral concepts and strategies for caregivers

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and were sensitive to cultural issues specific to different caregiver popula-tions. However, the need existed for clinical interventions relevant to pri-mary caregivers (Carradice et al., 2003; Kneebone & Martin, 2003). Inaddition, clinical interventions were the least understood component inthe family caregiver literature (Bourgeois, Schulz, & Burgio, 1996). Anunderstanding of these caregiving models and clinical implications relevantto mental health counselors would increase the interventions available.

The preponderance of caregiving models are found in the nursing re-search. This suggests the need for mental health counseling professionals tounderstand how caregiving models may be applied in a therapeutic set-ting. With the rapid growth of the population of older adults in the UnitedStates and the prevalence of dementia within this population, counselorsneed to be prepared to deliver counseling interventions to the caregivers forindividuals with dementia, who more often than not are family members.In addition, counselors need the tools and resources to deliver culturallysensitive therapeutic interventions. These interventions should focus onenhancing caregivers’ quality of life and health (Coon et al., 2003). In thisarticle, we describe three culturally sensitive and research-based caregivingmodels: (a) Finding a Balance Point (Shyu, 2002; Shyu et al., 1998); (b)Cognitive Stress and Coping Model (Lazarus & Folkman, 1984); and (c)Sociocultural Stress and Coping Model. In addition, we discuss model-specific, clinically relevant interventions for counselors.

FINDING A BALANCE POINT MODEL

Shyu’s model (Shyu, 2002; Shyu et al., 1998), Finding a Balance Point,examined myriad aspects of caregiving, such as caregiver support, resources,quality of care, and balancing competing needs of the caregiver. This modelexplained the caregiving process by showing the relationship among thefactors, the characteristics, and the consequences of caregiving. The authorsused an analogy of a tiao biaan dan, a flat carrying pole used by Chineselaborers to carry objects. Use of this pole involves finding the balancing pointby adjusting the pole on one’s shoulders while adjusting the weights on eachend of the pole. The three components of the Finding a Balance Point Modelare recognizing competing needs, weighing competing needs and makingjudgments about them, and choosing and implementing balancing strate-gies. Shyu found that caregivers who achieved the balance point of theircompeting needs accurately predicted the effects that caregiving had on them.

Components of the Finding a Balance Point ModelThe first component of the Finding a Balance Point Model, recognizingcompeting needs, consists of two subcomponents: plan-ahead recognitionand reactional recognition (Shyu, 2002). With plan-ahead recognition,

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the caregiver anticipates competing needs such as time for caregiving andtime for employment obligations. The second subcomponent, reactionalrecognition, occurs when the caregiver reacts to unanticipated competingneeds. The second component of this model, weighing competing needsand making judgments about them, consists of rehearsal weighing, by-ruleweighing, and rationalization weighing. Rehearsal weighing entails antici-pating or imagining choices and possible consequences. By-rule weighinginvolves making choices based on personal values or beliefs in the caregivingprocess. Rationalization weighing occurs when the caregiver reinterprets(rationalizes) choices after realizing that a choice (or choices) was not thebest one. Caregivers generally use one or more of these forms of weighingneeds. The third component of the Finding a Balance Point Model involveschoosing and implementing balancing strategies. The use of balancing strat-egies involves implementing behavioral strategies to find a balancing point.This includes managing behavioral and/or emotional problems, modifyingthe environment, altering schedules and activities, recruiting members tothe care team, running the care team, developing innovative care strategies,engaging in self-care activities, and managing treatment. Caregivers (ide-ally) move through the various components of the Finding a Balance PointModel while adjusting to the changing needs of the care receiver and tochanging caregiving conditions. According to this model, expert caregivers,those who deliver caregiving without jeopardizing their emotional or physicalhealth, primarily plan ahead when they recognize competing needs, userehearsal strategies when weighing competing needs, and are flexible inusing multiple balancing strategies. Failing caregivers, those who compro-mise their emotional and/or physical health, primarily use reaction recog-nition in response to competing needs, have problems weighing competingneeds, and use ineffective or fixed balancing strategies.

Clinical Interventions Based on the ModelVarious clinical interventions become evident in considering the Finding aBalance Point Model. Mental health counselors can play a key role in help-ing clients identify and develop their planning strategies, their strategiesfor anticipating and analyzing potential consequences of different choices,and their strategies for flexibility. An important component in this processis to help clients better identify and prioritize the competing needs of theirnuclear family and those of the care receiver (Shyu et al., 1998). Anotherintervention strategy within this model is in helping the client to recognizethe need for the recruitment, delegation, and rotation of other care provid-ers. Soliciting increased social support reduces caregiver burden and con-tributes to healthier outcomes (Connell et al., 2001). Additionally,increasing caregiver self-care activities, such as making time for themselvesand participating in psychoeducational interventions to increase the

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caregiver’s knowledge of dementia, also contribute to healthier outcomes(Shyu, 2002). Culturally specific support groups also provide additionalassistance that alleviates caregiving strain (Coon et al., 2003). Althoughintended for Taiwanese families, Shyu’s Finding a Balancing Point Modelcould readily be adapted by mental health counseling professionals for usewith Western families.

COGNITIVE STRESS AND COPING MODEL

Gonzalez used the Cognitive Stress and Coping Model (Gonzalez, 1997;Lazarus & Folkman, 1984) as a theoretical base for her exploration of simi-larities and differences in appraisals of behavioral problems, resourceful-ness, and coping efforts of family caregivers. From the perspective of thismodel, stress is defined as the meaning a person gives to a stressor (Lazarus& Folkman, 1984). The model asserts that a relationship exists between astressor and the behavioral and emotional responses of individuals to astressor. In addition, cognitive appraisals and psychological resources me-diate this relationship. The cognitive appraisals are either primary or sec-ondary. “Cognitive appraisal is the process through which an individualevaluates both the significance of a stressful encounter for his or her well-being (primary appraisal) and the options for coping (secondary appraisal)”(Gonzalez, 1997, p. 213). Appraisals can be benign, stressful, or irrel-evant. Although the terms primary and secondary are used in this model,this does not represent priorities of importance and both prove equallyimportant (Lazarus & Folkman, 1984). The psychological resource thatwas found to be available for caregivers was resourcefulness, and it affectsoutcome by regulating feelings and behaviors.

Types of CopingThe two types of coping identified in the Cognitive Stress and CopingModel are problem-focused coping and emotion-focused coping (Lazarus& Folkman, 1984). According to Kneebone and Martin (2003), the na-ture of the problem dictates the type of coping method used by the caregiver.Emotion-focused coping involves coping with stressful events through at-tempts to control tension. To ameliorate emotional distress, individualsengage in numerous emotion-focused strategies such as denial, detachment,minimization, or talk therapy (Lazarus & Folkman, 1984). This involvesventing their feelings, denying the situation, avoidance, talking it over withsomeone, or crying, all of which constitute emotion-focused coping strate-gies. In problem-focused coping, individuals cope with stressful events byascertaining the problem and then targeting the problem by reducing thestressor. These analytic, objective measures include articulating the prob-lem, solution-focused brainstorming, and executing a plan of action. An

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example of problem-focused coping would be a caregiver prioritizing 10different but commensurate problems and making a list of them in sometype of rank order for solving them.

Clinical Interventions for the ModelAn important intervention discussed from the perspective of the CognitiveStress and Coping Model is evaluating the meaning caregivers give to theircaregiving role. Gonzalez (1997) reported that caregivers experience less de-pression when they appraise situations and behaviors as less stressful. Mentalhealth counselors can assist clients to evaluate stressors, to identify how theyappraise the stress, and help clients to reframe the problems, identify re-sources and resourcefulness, and adopt an acceptance style of responding.The way in which caregivers appraise the situation and use their psychologi-cal resources helps modulate caregivers’ emotional and behavioral responses.Thus, importance should be placed on helping caregivers increase their psy-chological resources and responses. According to Kneebone and Martin (2003)and Samuelsson, Annerstedt, Elmstahl, Samuelsson, and Grafstrom (2001),caregivers can benefit from increasing their problem-focused strategies, whichinvolve cognitive-behavioral and behavioral strategies to reduce stressors.Additionally, mental health counseling professionals can assist clients in de-termining which problems will respond to problem-focused approaches andwhich will not. The Coping Response Inventory (Moos, 1993) is a valuabletool that can be used in the therapeutic process to help articulate how theclient is responding to the various stressors.

SOCIOCULTURAL STRESS AND COPING MODEL

The Sociocultural Stress and Coping Model provides some insight into thecaregiving experience from a sociocultural perspective (Knight et al., 2002).“Empirical work suggests that race, ethnicity, and culture influence importantoutcomes among caregivers of dementia patients, although the precise path-ways of these relationships are poorly understood” (Connell et al., 2001, p. 180).Lazarus and Folkman’s (1984) Cognitive Stress and Coping Model served asthe foundation for the Sociocultural Stress and Coping Model. However, thismodel had the addition of special considerations based on ethnicity that wouldaffect the appraisal of caregiver stress and other mediating factors (Knight et al.,2002). Lazarus and Folkman proposed that the “ethnicity as culture” differ-ences factor into the equation of the stress and coping model differently atevery level. Stress and coping models generally address these five aspects ofcaregiving: (a) variables such as age, gender, and relationship of caregiver toindividual with dementia; (b) demand placed on the caregiver; (c) the caregiver’sappraisal of the demands; (d) coping styles; and (e) the consequences of caregiving:physical and mental outcomes (Knight et al., 2002). Ethnicity influences

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the caregiver’s coping method and appraisal of stress. Ethnicity, in part,determines an individual’s resourcefulness, which is defined as one’s abilityto self-regulate stressful events, both internal and external (Gonzalez, 1997).According to Rosenbaum (1980), resourcefulness is learned by condition-ing, by experience, and by example. The Sociocultural Stress and CopingModel illustrates how the factor of ethnicity may influence these variableson different levels and to varying degrees. The four ethnic groups of caregiversaddressed in this model are African Americans, Japanese Americans, Latinos,and Koreans. Ethnic differences translated into different emotional andmental outcomes and other mediating variables (Knight et al., 2002).

Ethnic Differences Related to Outcomes and VariablesResearch suggests an increased prevalence of dementia with African Ameri-cans (Dilworth-Anderson & Gibson, 1999). For many African Americanfamilies, taking care of older adults is socially accepted and generally ex-pected. Therefore, the appraisal of a loved one with dementia differs fromthat of other cultures. African Americans tend to appraise caregiving for afamily member with dementia as less stressful and burdensome than dopersons in other cultures (Dilworth-Anderson & Gibson, 1999; Haley etal., 2004; Knight et al., 2002; Mui, 1992; Turner, Wallace, Anderson, &Bird, 2004). Family values held by the African American culture encour-age family caregiving of older adults, especially when they are ill. Thissupport system is not limited to spouses, but includes siblings, children,and extended family, such as other relatives or friends.

For Japanese Americans, it was necessary to understand how their cultureviewed caregiving of older adults and persons with dementia. Traditionallyspeaking, Japanese believe that their role is to respect and honor their parents.This affects the way they perceived caregiving. Many older Japanese Americanshold the view that one should not impose on or burden others. The concept ofGaman is the Japanese value, which means an avoidance of imposing on others(Knight et al., 2002). A typical Japanese caregiver does not readily seek helpoutside of the family to care for their loved one (Asai & Kameoka, 2005). Asaiand Kameoka stated, “Japanese family caregivers do not use formal servicesbecause of their fears of criticism from Seken [society, community, and thepublic] if they rely on help outside the family” (p. 116).

For Latino caregivers, a very high value is placed on familism (Neary &Mahoney, 2005; Valle, Yamada, & Barrio, 2004). The family is the centerof the Latino culture. Because of this paradigm, caring for the elders isapproached as a duty. Latino culture also value the extended family and thecommunity, therefore, a wider network of support exists to care for elders.This cultural factor contributes to decreased stress and anxiety amongcaregivers (Knight et al., 2002; Valle et al., 2004). These cultural valuesvary depending on the level of acculturation and cultural identity.

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For Asian caregivers, familism is valued highly but does not always influ-ence the role of caregiving (Asai & Kameoka, 2005; Li, 2004). In Koreanfamilies, the role of caregiver is traditionally assigned to the daughter-in-law,typically the eldest son’s wife. Korean families have reported receiving lesssocial support than do Korean American families. This was a possible reasonfor Korean caregivers reporting higher levels of distress (Knight et al., 2002).Additionally, Asian American family caregivers have reported personal issues,such as pride and not wanting the involvement of others, as barriers to seek-ing professional assistance in their caregiving role (Li, 2004). Although theSociocultural Stress and Coping Model contributes to the body of literatureon diverse groups of caregivers, there continues to be a need for additionalinformation on the caregiver experience and process for caregivers with di-verse racial, ethnic, and cultural backgrounds (Connell et al., 2001).

Clinical Interventions Based on the ModelAlthough the Sociocultural Stress and Coping Model presents informationon four different cultural groups, it is important for mental health counsel-ing professionals to resist the temptation to view all persons within a par-ticular racial or ethnic group as the same. According to Vontress (1986),individuals live in five intermingling cultures that influence how problemsare perceived, what potential solutions are, and what the counseling pro-cess is. The five cultures are (a) Universal—humans are biologically alike;(b) Ecological—location on earth affects how individuals relate to the envi-ronment; (c) National—language, politics, and worldviews; (d) Regionalarea specific cultures; and (e) Racio-ethnic—racial and ethnic differences.An important step is for mental health counselors to gain an understand-ing of the five different cultures that influence their clients. Effective coun-selors and their clients benefit when subculture (racial, ethnic, regional,economic, and social community), intraculture (educational, socioeconomicstatus, acculturation, and urban and rural backgrounds), and other indi-vidual differences are considered (Baruth & Manning, 1999).

When working from a multicultural perspective with clients who arecaregivers for a family member with dementia, an effective interventioncould involve exploring Vontress’s (1986) five intermingling cultures withthem and the resulting impact on how they view dementia. Thus, thecounselor would consider the caregiver’s universal, ecological, national, re-gional, and racio-ethnic cultures in the evaluation and treatment process.Counseling also would involve a discussion of family values and worldviews(Dilworth-Anderson & Gibson, 1999). This affords the counselor a broaderunderstanding of the caregiver and the impact of the caregiving experience.This discussion and exploration would clarify role expectations for familycaregivers. In addition to examining the intermingling culture, it is importantto assess the caregiver’s appraisal of stress and emotional response to the caregiving

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role. Although research suggests that racial and ethnic groups, such as Asian,Asian American, African American, and Latino, might experience less caregiverdistress than would Caucasian caregivers, these individuals also experience sig-nificant levels of emotional distress, stress, and strain (Connell et al., 2001;Dilworth-Anderson & Gibson, 1999; Haley et al., 2004; Knight et al., 2002;Li, 2004; Neary & Mahoney, 2005). Additionally, general cultural acceptanceof the caregiver role and high familism values contribute to caregiver hesitancyin validating their negative emotional responses. Thus, evaluating emotionalresponse and facilitating the expression of feelings such as anger, resentment, orloss assist the caregiving client in the emotional self-validation process.

Another intervention area suggested by the Sociocultural Stress andCoping Model approach is the identification and use of support systemsand community resources. Studies indicate that caregivers with fewer so-cial supports experience more negative caregiver outcomes (Coen, O’Boyle,Swanwick, & Coakley, 1999). Although the extended family of caregiversfrom multiple ethnic groups tend to be more involved, increasing supportsystems, including use of additional resources, such as other family mem-bers and community resources, contributes to more positive caregiver out-comes (Janevic & Connell, 2001; Knight et al., 2002).

CONCLUSION

Mental health counseling professionals should be cognizant of the dif-ferent caregiving models and clinical interventions available for a di-verse array of caregivers. Understanding how a person appraises thecaregiving situation offers insight into what type of coping skills theindividual uses. Considering individual and group differences in addi-tion to reactions, emotional responses, and susceptibility to various lifesituations may be valuable in approaching caregiver concerns. Examin-ing the impact of family values, culture, race, emotions, and cognitionleads to insights about coping methods and responses. In addition, anunderstanding of these models and related interventions provides men-tal health counselors with tools that can be integrated into individualor group counseling, education, or skills-training-focused interventions.Unfortunately, the numbers of individuals with dementia and the num-bers of their caregivers will continue to rise. Preparing mental healthcounseling professionals to better equip the family caregiver for her orhis role is one key to addressing this issue.

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culturally sensitive dementia caregiving models and clinical practice

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