American Journal of Alzheimer's Disease and Other Dementias http://aja.sagepub.com/
Burden Among Male Alzheimer's Caregivers: Effects of Distinct Coping Strategies Jennifer R. Geiger, Scott E. Wilks, Lauren L. Lovelace and Christina A. Spivey AM J ALZHEIMERS DIS OTHER DEMEN published online 28 September 2014 DOI: 10.1177/1533317514552666 The online version of this article can be found at: http://aja.sagepub.com/content/early/2014/09/26/1533317514552666
Published by: http://www.sagepublications.com
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Burden Among Male Alzheimer’s Caregivers: Effects of Distinct Coping Strategies
American Journal of Alzheimer’s Disease & Other Dementias® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514552666 aja.sagepub.com
Jennifer R. Geiger, MSW1, Scott E. Wilks, PhD, LMSW1, Lauren L. Lovelace, LMSW1,2, and Christina A. Spivey, PhD3
Abstract Focusing on the understudied, increasing population of male Alzheimer’s disease (AD) caregivers, the purpose of this study was to identify their likelihood of utilizing 3 coping strategies (task focused, emotion focused, and avoidance focused) and to examine the effects of each coping strategy on caregiving burden. Data were collected from 138 male AD caregivers in southern United States, including geographically proportional representation of African Americans in the sample. Stepwise regression revealed effects of each coping strategy on caregiving burden, controlling for demographics. The sample reported high burden. Task focused was the highest reported coping strategy. Yet, regression models indicated no significant effect of task-focused coping on burden outcomes. Emotion-focused and avoidance-focused coping each showed significant proportional effects on burden. Implications suggest that emotion- and avoidance-focused coping among male AD caregivers may be maladaptive, that is, reinforcing burden. Male AD caregivers may benefit from more task-focused coping, such as planning and active problem solving. Keywords Alzheimer’s disease, burden, caregiving, coping, male caregivers
Introduction Because of the devastating effect on physical, mental, and social function in Alzheimer’s disease (AD), AD caregivers often are subjected to significant caregiving burden.1 It is necessary for AD caregivers to use effective coping strategy to deal with tremendous financial, physical, and psychological stress resulting from providing care.2 Previous studies have shown that caregiver gender plays an important role in caregivers’ coping strategies and outcomes.2 However, Alzheimer’s caregiver burden and coping research has focused heavily on female caregivers, leaving the perspective from male AD caregivers an underresearched area. The purpose of this study is to fill the gap by focusing on male AD caregivers’ experiences regarding their usage of the following 3 coping strategies: task focused, emotion focused, and avoidance focused. Understanding male AD caregivers’ caregiving experiences and coping strategies is vital to social and health care service to help reduce caregiving burden and enhance positive health outcomes.3
reduction,5 or maladaptive strategies, such as denial, disengagement from the stressor, or substance use.6 Endler and Parker4 created a broad, 3-factor model that includes taskfocused, emotion-focused, and avoidance-focused coping. Other researchers (eg, refs7,8) have further categorized these coping strategies by 2 opposing types of approach: engagement and disengagement. Engagement coping refers to strategies that involve confronting stressors, while disengagement strategies involve avoiding stressors.7 Although some evidence supporting the use of the engagement and disengagement model of coping among dementia caregivers exists (see refs9-11), 3 factor models similar to the one proposed by Endler and Parker4 have also been utilized in recent research and meta-analyses of coping among dementia caregivers.12-15 The comparison of differing coping theories was beyond the scope of the current study;
1
Louisiana State University School of Social Work, Baton Rouge, LA, USA Baton Rouge General Medical Center, Baton Rouge, LA, USA 3 Department of Clinical Pharmacy, University of Tennessee Health Science Center, Memphis, TN, USA 2
Literature Review Coping refers to the way in which individuals attempt to relieve stress.4 Coping strategies can be either adaptive strategies through the use of problem-solving techniques or stress
Corresponding Author: Scott E. Wilks, PhD, LMSW, Louisiana State University School of Social Work, 203 HP Long Fieldhouse, Baton Rouge, LA 70803, USA. Email: [email protected]
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American Journal of Alzheimer’s Disease & Other Dementias®
2 therefore, this study used the 3-factor model proposed by Endler and Parker.4 Task-focused coping strategies include assessing challenges and problem solving to alleviate stress.4 Examples of taskfocused coping include creating a plan or actively working to solve a problem. Studies exploring the effectiveness of taskfocused coping have been mixed. On the one hand, previous studies have associated task-focused coping with decreased depression.16,17 However, recent meta-analyses have failed to show that task-focused coping has any noticeable effect on depression and anxiety among dementia caregivers.13,14 Nevertheless, task-focused coping remains common among dementia caregivers, with 1 study finding that the most commonly used task-focused strategies included strategic planning and active coping.18 Male caregivers are more likely to use task-focused coping strategies than female caregivers.19 Although taskfocused coping may be useful in the short-term, its effects may be less long-lasting when compared with the benefits of emotion-focused coping.12 Emotion-focused coping are cognitive strategies used to lessen psychological stress.4,5 Emotion-focused coping can refer to strategies such as positive reframing of a situation appraised as adverse, confiding in a friend, or worry and self-blame. Individuals who are depressed and anxious are more likely to use emotion-focused strategies than task-focused coping strategies.4 Women tend to use emotion-focused coping strategies more often than men,4 but the evidence regarding this strategy’s effects on outcome is mixed. One study found that emotion-focused coping strategies were negatively associated with depression among male caregivers,2 while another found an association between emotion-focused coping and lower anxiety levels after 1 year.12 On the contrary, Endler and Parker4 found evidence to show that emotion-focused coping was associated with higher levels of depression and anxiety in a general population. However, more recent meta-analyses by Li et al13,15 have shown that emotion-focused coping is associated with decreased anxiety and depression among dementia caregivers. Although 1 study4 has found that emotion-focused coping increases depression and anxiety among the general population, the majority of dementia caregiver studies seem to indicate that emotion-focused coping is an effective strategy.13,15 These mixed outcomes may be associated with differing definitions of emotion-focused coping, as the Endler and Parker4 study used a definition encompassing strategies such as self-blame and wishful thinking, while the studies showing positive outcomes2,12,13,15 defined emotionfocused coping as more acceptance- and support-based strategies. The current study used a definition similar to that of Endler and Parker.4 An avoidance-focused coping strategy involves purposely avoiding activities related to a stressor.4 Avoidance-focused coping includes such strategies as substance use or denial. The use of avoidance coping strategies is positively associated with depression in the general population17 and among AD caregivers.2 Dementia caregivers use avoidance-focused coping the least often, but the strategy is associated with significantly
higher burden, decreased life satisfaction, and negative physical health outcomes compared to task- and emotion-focused coping.18 Meta-analyses by Li et al13,15 also corroborate previous studies showing that avoidance-focused coping strategies are associated with increased depression and anxiety among dementia caregivers. Therefore, avoidance-focused coping is not only ineffective but may also be actively harmful. As many as 40% of caregivers are husbands, sons, or other male family members and friends,20 the number of male caregivers in the United States is expected to rise.21 Although men make up nearly half of all AD caregivers, studies exploring male caregiving issues are limited.21 The increasing number of male caregivers highlights the need for a discussion on the differing caregiving experiences between male and female AD caregivers. Gender has been reported as a relevant factor in predicting the severity of caregiver burden. Female AD caregivers report more severe levels of burden and depression than male AD caregivers.22,23 Female AD caregivers are also more likely to experience physical burden and higher levels of tension with other family members as a result of caregiving.24 Female caregivers are more likely to be employed outside the home in addition to caregiving and are on average 8.26 years younger than the male AD caregivers.24 Female caregivers are reportedly less likely than male caregivers to seek additional formal or informal assistance with daily tasks but more likely to participate in support groups.19 For those male caregivers who take on a primary caregiving role, most are motivated by a sense of love and duty toward their loved one.25 However, despite experiencing less burden than female AD caregivers,22,23 male AD caregivers may remain a reluctant source of informal caregiving. According to Mathew et al,25 many male caregivers who participated in their study were assisting another with complete activities of daily living (ADL) for the first time. Lack of caregiving experience may be deterring males from becoming a primary caregiving source for loved ones with dementia.25 Thus, research focused on the unique challenges and strengths of male caregivers is imperative for the future of AD caregiver research.
The Stress Process Model The theoretical model referenced in this study is the stress process model developed by Pearlin et al.26 Pearlin et al introduced this model in a study of stress among 555 nonpaid dementia caregivers across the United States. In this study, Pearlin et al26 outlined the multiple dimensions of caregiving stress. The stress process model argues that the 4 major contributing factors to caregiving stress include the caregiver’s background and context, stressors, mediators, and outcomes26 (see Figure 1). The caregiver’s background and context as defined in this theoretical model may include factors such as gender, socioeconomic status, ethnicity, age, and biopsychosocial history.26,43 As previously stated, gender is related to caregiver stress.24
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Figure 1. The stress process model.26
Figure 2. Stress process model in the context of caregiving with burden as the outcome.
Female caregivers are more likely to report feeling depressed or anxious.24 Additionally, age is positively correlated with caregiver burden.27 Those caregivers of lower socioeconomic status and those who are in poor health are also more likely to report significant burden.27 This model proposes 2 categories of stressors: primary stressors and secondary stressors.26 Primary stressors are those directly related to the role of caregiving, such as providing assistance with ADL and supervising care recipients.26 Caregivers who care for someone with significant functional impairments require greater assistance with ADL.28 These caregivers are more likely to report significant burden.28 Secondary stressors may include economic or social burden.26 In a study by Bookwala and Schulz,29 caregivers, females especially, reported significant stress related to a decrease in social activities and relationships as a result of caregiving duties. Increasing financial demands related to caring for someone with dementia are also related to higher levels of burden.29 Mediators of stress are divided into 2 categories: social support and coping.26 Caregivers may seek social support by attending a support group or receiving support from friends and family.26 Caregivers who report higher levels of social support are less likely to report burden.44 Coping strategies, as described previously, are strategies to lessen the effect of stress.5 In the stress process model, the outcomes of caregiving stress in the caregiver may include disturbances in mood (depression or anxiety) or a decline in the physical health.26 In the context of caregiving, background and context refer to the caregiver’s ethnicity, socioeconomic status, gender, and other demographic variables. Primary stressors include the activities associated directly with caregiving, such as feeding and bathing, and secondary stressors may include the negative emotional, social, and economic effects of caregiving. Mediating factors refer to the coping strategies of the caregiver and the social support available. Outcome in a caregiving context is the burden experienced by the caregiver, such as depression and anxiety26 (see Figure 2).
Figure 3. Model of the current study.
While the stress process model serves as this study’s theoretical framework for understanding caregiving stress, it is important to note that this study does not examine the mediation effects of coping strategies as the framework suggests. This study explores only a piece of the stress process model, the effect of caregiver coping strategies on burden, while controlling for demographic and background factors (see Figure 3).
Research Questions and Hypotheses The purpose of this study is to examine the effects of coping strategies (task focused, emotion focused, and avoidance focused) on burden among male AD caregivers. The following 2 research questions and related hypotheses were formulated.
Research Question 1: Among male AD caregivers, what is their likely utilization of task-focused coping, emotionfocused coping, and avoidance-focused coping?
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Hypothesis 1: The level of utilization of task-focused coping would be higher than emotion-focused and avoidance-focused coping strategies.
Research Question 2: Controlling for demographic factors, what is the effect of task-focused coping, emotionfocused coping, and avoidance-focused coping on caregiving burden outcomes, respectively?
Hypothesis 2: Task-focused coping would have a significant negative effect on caregiving burden outcomes; that is, the greater the likelihood of utilization of task-focused coping, the lower the levels of caregiving burden outcomes. Hypothesis 3: Emotion-focused coping would have a significant negative effect on caregiving burden outcomes; that is, the greater the likelihood of utilization of emotion-focused coping, the lower the levels of caregiving burden outcomes. Hypothesis 4: Avoidance-focused coping would have a significant positive effect on caregiving burden outcomes; that is, the greater the likelihood of utilization of avoidance-focused coping, the higher the levels of caregiving burden outcomes.
Methods Design and Sampling The current study used secondary data from a previous crosssectional analysis of self-reported data among AD caregivers in the southern United States.30 The survey instrument was developed by the researchers and adjusted after receiving critique from AD care professionals and caregivers.30 The sampling frame consisted of caregivers who provided informal caregiving for those who were diagnosed with AD or dementia and not institutionalized. Data collection was comprised of 2 phases. The first phase of data collection was through collaboration with a nonprofit, Alzheimer’s service organization in the southern United States. The dementia severity of care recipients receiving services through this organization can be no greater than middle stage (eg, care recipient must be mobile and able to toilet him- or herself). Due to this lack of variation in dementia severity, this particular piece of demographic information was not collected for the present study. Researchers recruited male AD caregivers who utilized support services from the organization. The vast majority of these aforementioned caregivers were caucasian. Because the study’s geographical location (American, Deep South) contains a higher concentration of African Americans compared to other regions of the nation, another recruitment method was necessary to ensure a proportionate number of African American caregivers in the sample.41 In this second recruitment phase, the researchers consulted an external researcher with expertise in working with this often-underserved caregiver population.31 With the help of this research consultant, questionnaires were distributed to adult day programs, community centers, churches, and home health
agencies in African American communities within the study’s auspice. All participants were assured confidentiality and offered US$10 as compensation for their participation. Among about 700 participants who completed the survey instrument, 138 male participants comprised the sample of this study. The researchers did not have access to female caregiver data.
Instrumentation A self-report survey was used to collect data on demographic information, caregiving contextual factors, care recipient’s AD aggression, caregiver coping strategy and resilience, and caregiving burden.30 Data analyzed in the current study included demographic information, caregiver coping strategy, and caregiving burden. Standardized measures used in this study were the coping inventory for task stressors (CITS32) to measure coping strategies and the Zarit Burden Interview (ZBI33) together with Revised Memory and Behavior Problems Checklist (RMBPC34) to measure caregiving burden. Demographics. The demographic information collected in the survey contained nonparametric measures of ethnicity, marital status, and relation to care recipient, along with age (note 1), a parametric level of measurement. Coping strategies. Caregiver’s coping strategy was assessed by CITS, a 21-item scale consisting of three 7-item subscales that measure the likelihood that individual utilizes task-focused, emotion-focused, and avoidance-focused strategy.32 Participants were asked to rate each item using a 5-point Likerttype response format ranging from 0—not at all to 4— extremely. Subscale global scores range from 0 to 28. A higher global score represents a higher likelihood that the participant uses the particular coping strategy. Examples of task-focused items include worked out a strategy for successful performance and concentrated hard on doing well. The emotion-focused subscale included items such as worried about what I would do next and wished that I could change what was happening. Avoidance-focused coping items were statements such as stayed detached or distanced from the situation and decided to save my efforts for something more worthwhile. Although the CITS is a general coping scale, it has been used in previous dementia caregiver studies.30,35 In the study by Matthews and Campbell,32 the reported reliability of each subscale was sound, with a coefficients between .84 and .86. Cronbach’s as for the task-, emotion-, and avoidance-focused subscales for the current study were .79, .87, and .77, respectively. Permission was not obtained to reproduce the CITS in full. Caregiving burden. Caregiving burden was assessed by 2 measures. One measure was the shortened, 4-item ZBI with 5-point Likert-type response format ranges from 0—never to 4—nearly always. Global scores on the shortened ZBI range from 0 to 16, with higher global scores indicating higher levels of caregiving burden. Reliability on this measure has been reported as fairly strong (eg, ref 33). The second burden
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measure was the 24-item RMBPC measuring the frequency of problem behaviors of the care recipient and the caregiver’s reactions to these problem behaviors.34 The current study was only interested in interpreting data collected in the RMBPC’s caregiver reaction subscale, as the link between behavioral symptoms and caregiver burden has already been well established (see refs36,37). In the caregiver reaction subscale, respondents report the degree to which the problem behaviors bother or upset him or her.34 Five-point Likert-type response format ranges from 0—not at all to 4—extremely. A higher global score indicates that problem behaviors have a more negative effect on the caregiver. Reliability on the RMBPC has been previously reported as very strong, and construct validity of caregiver reaction subscale has been established against another caregiver burden scale, the caregiver stress scale (eg, ref 34).
Table 1. Descriptive Statistics of Sample Characteristics. Variable
Attributes
Ethnicity
Caucasian/white African American/black Hispanic/Latina(o) Other Married Single (never married) Divorced Widowed Child Spouse/partner Grandchild Friend Sibling Other
Marital status
Relation to care recipient
Valid %
n
61.3 35.8 0.7 2.2 58 18.8 13.8 9.4 41.5 26.7 11.1 3.7 3.7 13.3
84 49 1 3 80 26 19 13 56 36 15 5 5 18
Agea mean ¼ 61 a
Age data were collected at a time previous to this study’s data collection.
Analytic Strategy Descriptive statistics. The nonparametric variables (most demographics) were analyzed and reported via frequencies and percentages. Parametric data, including the study’s primary variables of coping strategies and caregiving burden, were descriptively reported via central tendency. These statistics addressed Research question 1, along with Hypothesis 1. Correlations and regression. The magnitude and direction of the zero-order correlations between aggregate scores from measures of each coping strategy and burden (all parametric variables) were reported using Pearson’s r. Stepwise regression models were conducted to predict the effect of each coping strategy, including additions of demographic factors, on the burden outcomes. Although caregivers may utilize any combination of the 3 coping strategies simultaneously, the researchers were only interested in exploring each style independently. These regression models addressed Research question 1 and Hypotheses 2 to 4. Significance threshold was set at .05.
Table 2. Bivariate Correlations of Aggregate Global Scores Among Primary Variable Measures. Measure
RMBPC
s-ZBI
CITS-t
CITS-e
CITS-a
RMBPC s-ZBI CITS-t CITS-e CITS-a
– .480a 0.054 .594a .584b
– 0.053 .520a .226b
– 0.058 0.104
– .521b
–
Abbreviations: CITS-a, coping inventory for task stressors, avoidance-focused subscale; CITS-e, coping inventory for task stressors, emotion-focused subscale; CITS-t, coping inventory for task stressors, task-focused subscale; RMBPC, Revised Memory and Behavior Problems Checklist, reaction subscale; s-ZBI, shortened Zarit Burden Interview. a P < .01. b P < .05.
ZBI was 12.1 (SD ¼ 3.1), and the average global score on the reaction subscale of the RMBPC was 32.8 (SD ¼ 23.6).
Correlations
Results Descriptive Statistics Sample characteristics. The sample consisted of 138 male AD caregivers. The majority of the sample was caucasian (61.3%), while almost 36% were African American. Over half (58%) of the sample reported as married. The plurality of the sample (41.5%) reported being the child of the care recipient, while approximately 27% reported as spouse. The average age was approximately 60 years old. Please refer to Table 1 for comprehensive descriptive statistics of the sample population. Primary variables. The aggregate global scores from the CITS subscales were as follows: task-focused coping (M ¼ 20.1, standard deviation [SD] ¼ 4.3), emotion-focused coping (M ¼ 12.6, SD ¼ 6.6), and avoidance-focused coping (M ¼ 9.1, SD ¼ 5.5). The aggregate global score on the shortened
The strength of association between the burden measures, shortened ZBI and RMBPC, was fairly strong and significant. Taskfocused coping correlated negatively, although not significantly, with each burden measure. Emotion-focused coping associated positively and moderately strong with each burden measure. Avoidance-focused coping correlated in a similar manner with the burden measures. These latter 2 coping strategies significantly correlated with each other, although neither significantly associated with task-focused coping. Please refer to Table 2 for statistical, correlational details of these primary variables.
Stepwise Regression Models As correlational analyses suggested, regression models indicated that each burden measure (shortened ZBI and RMBPC) did not significantly regress on the task-focused coping
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6 Table 3. Stepwise Regression Model of s-ZBI Outcome With TaskFocused Coping and Demographic Factors. Step
Factors
1 2
CITS-t Ethnicity Marital status RCR CITS-t R2 D
b
P Value
R2
.035 .118 .025 .025 .027
.69 .23 .8 .79 .77
.001
Table 4. Stepwise Regression Model of the RMBPC Outcome With Task-Focused Coping and Demographic Factors. Factors
1 2
CITS-t Ethnicity Marital status RCR CITS-t R2 D
Step
Factors
1 2
CITS-e Ethnicity Marital status RCR CITS-e R2 D
.014 .013
Abbreviations: CITS-t, coping inventory for task stressors, task-focused subscale; RCR, relation to care recipient; s-ZBI, shortened Zarit Burden Interview.
Step
Table 6. Stepwise Regression Model of the RMBPC Outcome With Emotion-Focused Coping and Demographic Factors.
2
b
P Value
R
.025 .14 .07 .036 .05
.81 .233 .542 .732 .643
.01
P Value
R2
.585 .12 .072 .029 .586
Burden Among Male Alzheimer's Caregivers: Effects of Distinct Coping Strategies Jennifer R. Geiger, Scott E. Wilks, Lauren L. Lovelace and Christina A. Spivey AM J ALZHEIMERS DIS OTHER DEMEN published online 28 September 2014 DOI: 10.1177/1533317514552666 The online version of this article can be found at: http://aja.sagepub.com/content/early/2014/09/26/1533317514552666
Published by: http://www.sagepublications.com
Additional services and information for American Journal of Alzheimer's Disease and Other Dementias can be found at: Email Alerts: http://aja.sagepub.com/cgi/alerts Subscriptions: http://aja.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav
>> OnlineFirst Version of Record - Sep 28, 2014 What is This?
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Current Topics in Care
Burden Among Male Alzheimer’s Caregivers: Effects of Distinct Coping Strategies
American Journal of Alzheimer’s Disease & Other Dementias® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514552666 aja.sagepub.com
Jennifer R. Geiger, MSW1, Scott E. Wilks, PhD, LMSW1, Lauren L. Lovelace, LMSW1,2, and Christina A. Spivey, PhD3
Abstract Focusing on the understudied, increasing population of male Alzheimer’s disease (AD) caregivers, the purpose of this study was to identify their likelihood of utilizing 3 coping strategies (task focused, emotion focused, and avoidance focused) and to examine the effects of each coping strategy on caregiving burden. Data were collected from 138 male AD caregivers in southern United States, including geographically proportional representation of African Americans in the sample. Stepwise regression revealed effects of each coping strategy on caregiving burden, controlling for demographics. The sample reported high burden. Task focused was the highest reported coping strategy. Yet, regression models indicated no significant effect of task-focused coping on burden outcomes. Emotion-focused and avoidance-focused coping each showed significant proportional effects on burden. Implications suggest that emotion- and avoidance-focused coping among male AD caregivers may be maladaptive, that is, reinforcing burden. Male AD caregivers may benefit from more task-focused coping, such as planning and active problem solving. Keywords Alzheimer’s disease, burden, caregiving, coping, male caregivers
Introduction Because of the devastating effect on physical, mental, and social function in Alzheimer’s disease (AD), AD caregivers often are subjected to significant caregiving burden.1 It is necessary for AD caregivers to use effective coping strategy to deal with tremendous financial, physical, and psychological stress resulting from providing care.2 Previous studies have shown that caregiver gender plays an important role in caregivers’ coping strategies and outcomes.2 However, Alzheimer’s caregiver burden and coping research has focused heavily on female caregivers, leaving the perspective from male AD caregivers an underresearched area. The purpose of this study is to fill the gap by focusing on male AD caregivers’ experiences regarding their usage of the following 3 coping strategies: task focused, emotion focused, and avoidance focused. Understanding male AD caregivers’ caregiving experiences and coping strategies is vital to social and health care service to help reduce caregiving burden and enhance positive health outcomes.3
reduction,5 or maladaptive strategies, such as denial, disengagement from the stressor, or substance use.6 Endler and Parker4 created a broad, 3-factor model that includes taskfocused, emotion-focused, and avoidance-focused coping. Other researchers (eg, refs7,8) have further categorized these coping strategies by 2 opposing types of approach: engagement and disengagement. Engagement coping refers to strategies that involve confronting stressors, while disengagement strategies involve avoiding stressors.7 Although some evidence supporting the use of the engagement and disengagement model of coping among dementia caregivers exists (see refs9-11), 3 factor models similar to the one proposed by Endler and Parker4 have also been utilized in recent research and meta-analyses of coping among dementia caregivers.12-15 The comparison of differing coping theories was beyond the scope of the current study;
1
Louisiana State University School of Social Work, Baton Rouge, LA, USA Baton Rouge General Medical Center, Baton Rouge, LA, USA 3 Department of Clinical Pharmacy, University of Tennessee Health Science Center, Memphis, TN, USA 2
Literature Review Coping refers to the way in which individuals attempt to relieve stress.4 Coping strategies can be either adaptive strategies through the use of problem-solving techniques or stress
Corresponding Author: Scott E. Wilks, PhD, LMSW, Louisiana State University School of Social Work, 203 HP Long Fieldhouse, Baton Rouge, LA 70803, USA. Email: [email protected]
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American Journal of Alzheimer’s Disease & Other Dementias®
2 therefore, this study used the 3-factor model proposed by Endler and Parker.4 Task-focused coping strategies include assessing challenges and problem solving to alleviate stress.4 Examples of taskfocused coping include creating a plan or actively working to solve a problem. Studies exploring the effectiveness of taskfocused coping have been mixed. On the one hand, previous studies have associated task-focused coping with decreased depression.16,17 However, recent meta-analyses have failed to show that task-focused coping has any noticeable effect on depression and anxiety among dementia caregivers.13,14 Nevertheless, task-focused coping remains common among dementia caregivers, with 1 study finding that the most commonly used task-focused strategies included strategic planning and active coping.18 Male caregivers are more likely to use task-focused coping strategies than female caregivers.19 Although taskfocused coping may be useful in the short-term, its effects may be less long-lasting when compared with the benefits of emotion-focused coping.12 Emotion-focused coping are cognitive strategies used to lessen psychological stress.4,5 Emotion-focused coping can refer to strategies such as positive reframing of a situation appraised as adverse, confiding in a friend, or worry and self-blame. Individuals who are depressed and anxious are more likely to use emotion-focused strategies than task-focused coping strategies.4 Women tend to use emotion-focused coping strategies more often than men,4 but the evidence regarding this strategy’s effects on outcome is mixed. One study found that emotion-focused coping strategies were negatively associated with depression among male caregivers,2 while another found an association between emotion-focused coping and lower anxiety levels after 1 year.12 On the contrary, Endler and Parker4 found evidence to show that emotion-focused coping was associated with higher levels of depression and anxiety in a general population. However, more recent meta-analyses by Li et al13,15 have shown that emotion-focused coping is associated with decreased anxiety and depression among dementia caregivers. Although 1 study4 has found that emotion-focused coping increases depression and anxiety among the general population, the majority of dementia caregiver studies seem to indicate that emotion-focused coping is an effective strategy.13,15 These mixed outcomes may be associated with differing definitions of emotion-focused coping, as the Endler and Parker4 study used a definition encompassing strategies such as self-blame and wishful thinking, while the studies showing positive outcomes2,12,13,15 defined emotionfocused coping as more acceptance- and support-based strategies. The current study used a definition similar to that of Endler and Parker.4 An avoidance-focused coping strategy involves purposely avoiding activities related to a stressor.4 Avoidance-focused coping includes such strategies as substance use or denial. The use of avoidance coping strategies is positively associated with depression in the general population17 and among AD caregivers.2 Dementia caregivers use avoidance-focused coping the least often, but the strategy is associated with significantly
higher burden, decreased life satisfaction, and negative physical health outcomes compared to task- and emotion-focused coping.18 Meta-analyses by Li et al13,15 also corroborate previous studies showing that avoidance-focused coping strategies are associated with increased depression and anxiety among dementia caregivers. Therefore, avoidance-focused coping is not only ineffective but may also be actively harmful. As many as 40% of caregivers are husbands, sons, or other male family members and friends,20 the number of male caregivers in the United States is expected to rise.21 Although men make up nearly half of all AD caregivers, studies exploring male caregiving issues are limited.21 The increasing number of male caregivers highlights the need for a discussion on the differing caregiving experiences between male and female AD caregivers. Gender has been reported as a relevant factor in predicting the severity of caregiver burden. Female AD caregivers report more severe levels of burden and depression than male AD caregivers.22,23 Female AD caregivers are also more likely to experience physical burden and higher levels of tension with other family members as a result of caregiving.24 Female caregivers are more likely to be employed outside the home in addition to caregiving and are on average 8.26 years younger than the male AD caregivers.24 Female caregivers are reportedly less likely than male caregivers to seek additional formal or informal assistance with daily tasks but more likely to participate in support groups.19 For those male caregivers who take on a primary caregiving role, most are motivated by a sense of love and duty toward their loved one.25 However, despite experiencing less burden than female AD caregivers,22,23 male AD caregivers may remain a reluctant source of informal caregiving. According to Mathew et al,25 many male caregivers who participated in their study were assisting another with complete activities of daily living (ADL) for the first time. Lack of caregiving experience may be deterring males from becoming a primary caregiving source for loved ones with dementia.25 Thus, research focused on the unique challenges and strengths of male caregivers is imperative for the future of AD caregiver research.
The Stress Process Model The theoretical model referenced in this study is the stress process model developed by Pearlin et al.26 Pearlin et al introduced this model in a study of stress among 555 nonpaid dementia caregivers across the United States. In this study, Pearlin et al26 outlined the multiple dimensions of caregiving stress. The stress process model argues that the 4 major contributing factors to caregiving stress include the caregiver’s background and context, stressors, mediators, and outcomes26 (see Figure 1). The caregiver’s background and context as defined in this theoretical model may include factors such as gender, socioeconomic status, ethnicity, age, and biopsychosocial history.26,43 As previously stated, gender is related to caregiver stress.24
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Figure 1. The stress process model.26
Figure 2. Stress process model in the context of caregiving with burden as the outcome.
Female caregivers are more likely to report feeling depressed or anxious.24 Additionally, age is positively correlated with caregiver burden.27 Those caregivers of lower socioeconomic status and those who are in poor health are also more likely to report significant burden.27 This model proposes 2 categories of stressors: primary stressors and secondary stressors.26 Primary stressors are those directly related to the role of caregiving, such as providing assistance with ADL and supervising care recipients.26 Caregivers who care for someone with significant functional impairments require greater assistance with ADL.28 These caregivers are more likely to report significant burden.28 Secondary stressors may include economic or social burden.26 In a study by Bookwala and Schulz,29 caregivers, females especially, reported significant stress related to a decrease in social activities and relationships as a result of caregiving duties. Increasing financial demands related to caring for someone with dementia are also related to higher levels of burden.29 Mediators of stress are divided into 2 categories: social support and coping.26 Caregivers may seek social support by attending a support group or receiving support from friends and family.26 Caregivers who report higher levels of social support are less likely to report burden.44 Coping strategies, as described previously, are strategies to lessen the effect of stress.5 In the stress process model, the outcomes of caregiving stress in the caregiver may include disturbances in mood (depression or anxiety) or a decline in the physical health.26 In the context of caregiving, background and context refer to the caregiver’s ethnicity, socioeconomic status, gender, and other demographic variables. Primary stressors include the activities associated directly with caregiving, such as feeding and bathing, and secondary stressors may include the negative emotional, social, and economic effects of caregiving. Mediating factors refer to the coping strategies of the caregiver and the social support available. Outcome in a caregiving context is the burden experienced by the caregiver, such as depression and anxiety26 (see Figure 2).
Figure 3. Model of the current study.
While the stress process model serves as this study’s theoretical framework for understanding caregiving stress, it is important to note that this study does not examine the mediation effects of coping strategies as the framework suggests. This study explores only a piece of the stress process model, the effect of caregiver coping strategies on burden, while controlling for demographic and background factors (see Figure 3).
Research Questions and Hypotheses The purpose of this study is to examine the effects of coping strategies (task focused, emotion focused, and avoidance focused) on burden among male AD caregivers. The following 2 research questions and related hypotheses were formulated.
Research Question 1: Among male AD caregivers, what is their likely utilization of task-focused coping, emotionfocused coping, and avoidance-focused coping?
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Hypothesis 1: The level of utilization of task-focused coping would be higher than emotion-focused and avoidance-focused coping strategies.
Research Question 2: Controlling for demographic factors, what is the effect of task-focused coping, emotionfocused coping, and avoidance-focused coping on caregiving burden outcomes, respectively?
Hypothesis 2: Task-focused coping would have a significant negative effect on caregiving burden outcomes; that is, the greater the likelihood of utilization of task-focused coping, the lower the levels of caregiving burden outcomes. Hypothesis 3: Emotion-focused coping would have a significant negative effect on caregiving burden outcomes; that is, the greater the likelihood of utilization of emotion-focused coping, the lower the levels of caregiving burden outcomes. Hypothesis 4: Avoidance-focused coping would have a significant positive effect on caregiving burden outcomes; that is, the greater the likelihood of utilization of avoidance-focused coping, the higher the levels of caregiving burden outcomes.
Methods Design and Sampling The current study used secondary data from a previous crosssectional analysis of self-reported data among AD caregivers in the southern United States.30 The survey instrument was developed by the researchers and adjusted after receiving critique from AD care professionals and caregivers.30 The sampling frame consisted of caregivers who provided informal caregiving for those who were diagnosed with AD or dementia and not institutionalized. Data collection was comprised of 2 phases. The first phase of data collection was through collaboration with a nonprofit, Alzheimer’s service organization in the southern United States. The dementia severity of care recipients receiving services through this organization can be no greater than middle stage (eg, care recipient must be mobile and able to toilet him- or herself). Due to this lack of variation in dementia severity, this particular piece of demographic information was not collected for the present study. Researchers recruited male AD caregivers who utilized support services from the organization. The vast majority of these aforementioned caregivers were caucasian. Because the study’s geographical location (American, Deep South) contains a higher concentration of African Americans compared to other regions of the nation, another recruitment method was necessary to ensure a proportionate number of African American caregivers in the sample.41 In this second recruitment phase, the researchers consulted an external researcher with expertise in working with this often-underserved caregiver population.31 With the help of this research consultant, questionnaires were distributed to adult day programs, community centers, churches, and home health
agencies in African American communities within the study’s auspice. All participants were assured confidentiality and offered US$10 as compensation for their participation. Among about 700 participants who completed the survey instrument, 138 male participants comprised the sample of this study. The researchers did not have access to female caregiver data.
Instrumentation A self-report survey was used to collect data on demographic information, caregiving contextual factors, care recipient’s AD aggression, caregiver coping strategy and resilience, and caregiving burden.30 Data analyzed in the current study included demographic information, caregiver coping strategy, and caregiving burden. Standardized measures used in this study were the coping inventory for task stressors (CITS32) to measure coping strategies and the Zarit Burden Interview (ZBI33) together with Revised Memory and Behavior Problems Checklist (RMBPC34) to measure caregiving burden. Demographics. The demographic information collected in the survey contained nonparametric measures of ethnicity, marital status, and relation to care recipient, along with age (note 1), a parametric level of measurement. Coping strategies. Caregiver’s coping strategy was assessed by CITS, a 21-item scale consisting of three 7-item subscales that measure the likelihood that individual utilizes task-focused, emotion-focused, and avoidance-focused strategy.32 Participants were asked to rate each item using a 5-point Likerttype response format ranging from 0—not at all to 4— extremely. Subscale global scores range from 0 to 28. A higher global score represents a higher likelihood that the participant uses the particular coping strategy. Examples of task-focused items include worked out a strategy for successful performance and concentrated hard on doing well. The emotion-focused subscale included items such as worried about what I would do next and wished that I could change what was happening. Avoidance-focused coping items were statements such as stayed detached or distanced from the situation and decided to save my efforts for something more worthwhile. Although the CITS is a general coping scale, it has been used in previous dementia caregiver studies.30,35 In the study by Matthews and Campbell,32 the reported reliability of each subscale was sound, with a coefficients between .84 and .86. Cronbach’s as for the task-, emotion-, and avoidance-focused subscales for the current study were .79, .87, and .77, respectively. Permission was not obtained to reproduce the CITS in full. Caregiving burden. Caregiving burden was assessed by 2 measures. One measure was the shortened, 4-item ZBI with 5-point Likert-type response format ranges from 0—never to 4—nearly always. Global scores on the shortened ZBI range from 0 to 16, with higher global scores indicating higher levels of caregiving burden. Reliability on this measure has been reported as fairly strong (eg, ref 33). The second burden
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measure was the 24-item RMBPC measuring the frequency of problem behaviors of the care recipient and the caregiver’s reactions to these problem behaviors.34 The current study was only interested in interpreting data collected in the RMBPC’s caregiver reaction subscale, as the link between behavioral symptoms and caregiver burden has already been well established (see refs36,37). In the caregiver reaction subscale, respondents report the degree to which the problem behaviors bother or upset him or her.34 Five-point Likert-type response format ranges from 0—not at all to 4—extremely. A higher global score indicates that problem behaviors have a more negative effect on the caregiver. Reliability on the RMBPC has been previously reported as very strong, and construct validity of caregiver reaction subscale has been established against another caregiver burden scale, the caregiver stress scale (eg, ref 34).
Table 1. Descriptive Statistics of Sample Characteristics. Variable
Attributes
Ethnicity
Caucasian/white African American/black Hispanic/Latina(o) Other Married Single (never married) Divorced Widowed Child Spouse/partner Grandchild Friend Sibling Other
Marital status
Relation to care recipient
Valid %
n
61.3 35.8 0.7 2.2 58 18.8 13.8 9.4 41.5 26.7 11.1 3.7 3.7 13.3
84 49 1 3 80 26 19 13 56 36 15 5 5 18
Agea mean ¼ 61 a
Age data were collected at a time previous to this study’s data collection.
Analytic Strategy Descriptive statistics. The nonparametric variables (most demographics) were analyzed and reported via frequencies and percentages. Parametric data, including the study’s primary variables of coping strategies and caregiving burden, were descriptively reported via central tendency. These statistics addressed Research question 1, along with Hypothesis 1. Correlations and regression. The magnitude and direction of the zero-order correlations between aggregate scores from measures of each coping strategy and burden (all parametric variables) were reported using Pearson’s r. Stepwise regression models were conducted to predict the effect of each coping strategy, including additions of demographic factors, on the burden outcomes. Although caregivers may utilize any combination of the 3 coping strategies simultaneously, the researchers were only interested in exploring each style independently. These regression models addressed Research question 1 and Hypotheses 2 to 4. Significance threshold was set at .05.
Table 2. Bivariate Correlations of Aggregate Global Scores Among Primary Variable Measures. Measure
RMBPC
s-ZBI
CITS-t
CITS-e
CITS-a
RMBPC s-ZBI CITS-t CITS-e CITS-a
– .480a 0.054 .594a .584b
– 0.053 .520a .226b
– 0.058 0.104
– .521b
–
Abbreviations: CITS-a, coping inventory for task stressors, avoidance-focused subscale; CITS-e, coping inventory for task stressors, emotion-focused subscale; CITS-t, coping inventory for task stressors, task-focused subscale; RMBPC, Revised Memory and Behavior Problems Checklist, reaction subscale; s-ZBI, shortened Zarit Burden Interview. a P < .01. b P < .05.
ZBI was 12.1 (SD ¼ 3.1), and the average global score on the reaction subscale of the RMBPC was 32.8 (SD ¼ 23.6).
Correlations
Results Descriptive Statistics Sample characteristics. The sample consisted of 138 male AD caregivers. The majority of the sample was caucasian (61.3%), while almost 36% were African American. Over half (58%) of the sample reported as married. The plurality of the sample (41.5%) reported being the child of the care recipient, while approximately 27% reported as spouse. The average age was approximately 60 years old. Please refer to Table 1 for comprehensive descriptive statistics of the sample population. Primary variables. The aggregate global scores from the CITS subscales were as follows: task-focused coping (M ¼ 20.1, standard deviation [SD] ¼ 4.3), emotion-focused coping (M ¼ 12.6, SD ¼ 6.6), and avoidance-focused coping (M ¼ 9.1, SD ¼ 5.5). The aggregate global score on the shortened
The strength of association between the burden measures, shortened ZBI and RMBPC, was fairly strong and significant. Taskfocused coping correlated negatively, although not significantly, with each burden measure. Emotion-focused coping associated positively and moderately strong with each burden measure. Avoidance-focused coping correlated in a similar manner with the burden measures. These latter 2 coping strategies significantly correlated with each other, although neither significantly associated with task-focused coping. Please refer to Table 2 for statistical, correlational details of these primary variables.
Stepwise Regression Models As correlational analyses suggested, regression models indicated that each burden measure (shortened ZBI and RMBPC) did not significantly regress on the task-focused coping
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Factors
1 2
CITS-t Ethnicity Marital status RCR CITS-t R2 D
b
P Value
R2
.035 .118 .025 .025 .027
.69 .23 .8 .79 .77
.001
Table 4. Stepwise Regression Model of the RMBPC Outcome With Task-Focused Coping and Demographic Factors. Factors
1 2
CITS-t Ethnicity Marital status RCR CITS-t R2 D
Step
Factors
1 2
CITS-e Ethnicity Marital status RCR CITS-e R2 D
.014 .013
Abbreviations: CITS-t, coping inventory for task stressors, task-focused subscale; RCR, relation to care recipient; s-ZBI, shortened Zarit Burden Interview.
Step
Table 6. Stepwise Regression Model of the RMBPC Outcome With Emotion-Focused Coping and Demographic Factors.
2
b
P Value
R
.025 .14 .07 .036 .05
.81 .233 .542 .732 .643
.01
P Value
R2
.585 .12 .072 .029 .586
