Journal of Gerontological Social Work, 58:253–271, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0163-4372 print/1540-4048 online DOI: 10.1080/01634372.2014.978927
Predictors of Depression Among Caregivers of Older Adults With Severe Mental Illness SHERRY M. CUMMINGS College of Social Work, University of Tennessee, Nashville, Tennessee, USA
NANCY P. KROPF School of Social Work, Georgia State University, Atlanta, Georgia, USA
Caregivers of older persons with severe mental illness (SMI) contend with the double challenge of providing assistance related to both the psychiatric condition and older age of their family member. Study explored factors influencing negative psychological outcomes experienced by caregivers (n = 96) of older adults with SMI. One-quarter of caregivers scored at or above the clinical point for depression. Low income, care recipient gender, poor health, problems dealing with care recipient’s symptoms and the interaction of health and problems dealing with symptoms were associated with higher rates of depression. Implications for service provision and future research are discussed. KEYWORDS caregiving, depression, severe mental illness
Research indicates that caregivers of persons with serious psychiatric disorders bear enormous social and psychological consequences as a result of their care responsibilities (Mitsonis et al., 2012; Saunders, 2003). As the aging population increases, the subpopulation of older adults with a serious mental illness (SMI) is also rising. Although the term severe mental illness may refer to a variety of mental health disorders, typically illnesses classified as SMI include schizophrenia and schizophrenia-related disorders, bipolar disorder, major recurrent depressive disorder, and personality disorders (Cummings & Kropf, 2011). Current estimates suggest that about 1.4% of the US population
Received 15 January 2014; revised 13 October 2014; accepted 16 October 2014. Address correspondence to Sherry M. Cummings, University of Tennessee, College of Social Work, 193 E. Polk Avenue, Nashville, TN 37210, USA. E-mail: [email protected] 253
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have SMI and are over age 65 (Hudson, 2012). As the baby boom generation ages, challenges in meeting the increased mental health needs of the older population are also expected to increase. Unfortunately, mental health needs of older adults continue to be overlooked in treatment and policy arenas (Friedman, Williams, Kidder, & Furst, 2013). Caregiving for older adults with SMI is a challenging role, but one that has received scant attention from researchers and practitioners. The intersection of the aging process with the SMI condition creates substantial difficulties in care provision, which has been termed the “double demand for care” (Cummings & MacNeil, 2008, p. 56). Compared to their counterparts without psychiatric disorders, older adults with SMI have more health-related challenges. In addition, those with a mental illness and/or addiction are more likely to have multiple chronic illnesses (Lin, Zhang, Leung, & Clark, 2011). Due to the nature of some psychiatric conditions, persons with SMI may also have compromised the social, financial, and emotional resources that are needed in later life (Shepherd et al., 2012). As a result, the demand for assistance from those family members who are available to provide care is often heightened. Research on care provision indicates that stressful situations lead to both physical and mental health problems for caregivers, yet little is known about the level or consequences of the stress experienced by caregivers of older adults with SMI. The general literature on caring for older individuals indicates that care provision can result in negative outcomes for the caregiver, including depression (Smith, Williamson, Miller, & Schulz, 2011), burden (Ornstein & Gaugler, 2012), and increased health concerns (Hoffman, Lee, & Mendez-Luck, 2012). Likewise, studies on caregivers of younger persons with SMI indicate increased caregiver distress and burden (Kim et al., 2007; MöllerLeimkühler, 2005). The purpose of this study was to examine the extent and predictors of depression among caregivers of older adults with SMI.
CONCEPTUAL MODEL The conceptual model guiding this study was the Stress-Process Model (SPM; Pearlin, Mullan, Semple, & Skaff, 1990). This model was used as a framework for conceptualizing constructs to be explored in the study and organizing variables for inclusion in the analytic model. SPM has been used extensively in caregiving research and provides a basis for examining the experience of caring for older adults with SMI. The model includes four major components that predict and explain stressful caregiver experiences. Background and context of stress refers to sociodemographic characteristics that may either directly or indirectly influence stressful outcomes for the care providers. Stress, or burden, results from objective factors in a person’s environment coupled with a negative appraisal of these factors. Protective factors, such
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as coping capacities and social resources, help to ameliorate the deleterious effects of stressors. Manifestations of stress often include impaired physical health and negative psychological symptoms such as depression and anxiety.
CARE PROVISION IN AGING AND SMI Although a vast literature exists on care provision for older adults, there is a paucity of research on care for an older adult with SMI. Using the Stress Process Model, literature on care of older adults, in general, is reviewed. In areas where there is research on care for younger adults with SMI, these studies are also included.
Background and Context of Care The literature on both aging and SMI indicates that challenging conditions of care provision create a higher level of stress for the caregiver. Research on later life indicates that women caring for older adults have higher levels of caregiving burden or depression than their male counterparts (Davies, Sridhar, Newkirk, Beaudreau, & O’Hara, 2012; Sorensen & Conwett, 2011). Spousal caregivers often experience greater negative outcomes of care than do adult children (Covinsky et al., 2003; Zivin & Christakis, 2007). Additionally, care providers who have little choice in assuming caregiving report the highest level of stress (Schulz et al., 2012). Similarly, the context of caregiving for an individual with SMI also involves significant challenges. In addition to the psychiatric conditions, family members often have to deal with other difficult situations such as erratic, violent behavior and substance abuse (Biegel, Katz-Saltzman, Meeks, Brown, & Tracy, 2010; Thompson, 2007). Financial and resource issues are also challenges for caregiving families who often bear living and treatment expenses for the person with SMI (Shepherd et al., 2012; Tsang, Tam, Chan, & Chang, 2003). Unfortunately, poorly coordinated or nonexistent services for people with SMI may add to the difficulties experienced by families (Crowe & Lyness, 2014; Cummings, 2009). The context and conditions of care lead many caregivers to feel unprepared and alone in their caregiving role (Jönsson, Skärsäter, Wijk, & Danielson, 2011; Stjernswärd, & Östman, 2008). The manifestation of caregiving stress has cumulative adverse consequences. As Barker, Greenberg, Seltzer, and Almeida (2012) reported, elevated cortisol levels found in parents of sons and daughters with SMI can translate into negative health conditions over time. Other research compared caregiving experiences of older parents of adult children with mental illnesses, intellectual disabilities, or healthy controls. Parents of adults with SMI had poorer health and psychological functioning than the other
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groups (Ghosh, Greenberg, & Seltzer, 2012). In addition, parents who were caregiving for SMI adult children were more likely to have a spouse that became disabled, as well. Researchers have suggested that these findings provide “further evidence of the wear and tear of long-term caregiving” (Ghosh et al., 2012, p. 1122) for parents with an SMI adult child.
Objective and Subjective Burden Objective burden relates to the concrete demands or responsibilities of care, such as level of assistance provided or the number of hours spent in caregiving. In studies of caregiving for adults in general, objective burden has been related to care recipient behaviors, to cognitive and functional impairments, and to coresidential living arrangements (Savundranayagam, Montgomery, & Kosloski, 2011; Wolfs, Kessels, Severens, Brouwer, de Vugt, Verhey, & Dirksen, 2012). More specific to mental illness, objective burden has been associated with the level of caregiving tasks assumed, increases in care demands over time, and role overload for SMI care providers (Saunders, 2003; Song, Mailick & Greenberg, 2014). Studies of younger persons with SMI indicate that the clinical features of the psychiatric conditions significantly contribute to caregiver distress. These features include both positive (e.g., hallucinations and delusions) and negative (e.g., depression, withdrawal, lethargy) symptoms, as well as the frequency of behavioral problems (Mitsonis et al., 2012; Saunders, 2003). Subjective burden is related to the appraisal or experience of care. Negative appraisal among caregivers of older adults has been associated with caregiver characteristics such as younger age, relationship, low levels of education, and care recipient behavioral problems (Kim, et al., 2007; Reinares et al., 2006). A study of caregivers of older adults with SMI also found that provision of higher levels of assistance with functional activities of daily living, increased care recipient symptoms, and caregiver income were predictive of subjective burden (Cummings & MacNeil, 2008). Caregivers of younger SMI adults often experience subjective burden related to the illness symptoms, role dysfunction, household disruption and patient diagnosis (Möller-Leimkühler, 2005; Reinares et al., 2006). In addition, coresidence increases levels of subjective burden for the care providers (Aschbrenner, Greenberg, Allen, & Seltzer, 2010). Beliefs about the expectation of care (e.g., what should be done, how services should work) are also predictors of subjective burden (Van der Voort, Goossens, & Van Der Bijl, 2007). Regardless of the role relationship, caregivers of persons with SMI perceive that they have an obligation to care for their family member. Although some fulfill this task willingly, other caregivers feel that it is an obligation and perceived it as burdensome (Rowe, 2012). For spousal caregivers, commitment to the relationship (e.g., staying married to the person with SMI)
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is a complex and dynamic experience (Jungbauer, Wittmund, Dietrich, & Angermeyer, 2004; Lawn & McMahon, 2014). Unlike parents who may see their connection to a son or daughter with SMI as indissolvable, spouses continually reexamine, and often struggle, with decisions about remaining in the partnership.
Protective Factors Factors that ameliorate the burdens and stress of care include perceived social support for the care provider, and a positive relationship between caregiver and recipient (Pinquart, & Sörensen, 2003; Wilks & Croom, 2008). High levels of religiosity also served as a protective factor for the caregiver (Morano & King, 2005). In spite of the demands, caregivers of both older adults and those with SMI report rewards and benefits that buffer the amount of stress that is experienced. Some caregivers report a higher level of empathy and awareness about the challenges of living as a person with a disability, and experience a sense of pride in their relationship with the person who has SMI (Chen & Lukens, 2011).
Manifestation of Stress From the vast literature on care provision, there is a clear understanding that caregiving can result in negative outcomes on caregiver functioning, especially in health and mental health domains. Spouses who watch their loved one experience suffering as a result of their health problems have increased heart and blood pressure rates themselves (Monin et al., 2010). Likewise, caregiving has adverse impacts on mental health functioning, with caregivers experiencing increased depression and anxiety levels (Sorensen & Conwett, 2011; Vitaliano, Zhang, & Scanlan, 2003). Caring for an individual with SMI can also result in adverse outcomes for care providers. Existing research reveals that care providers of younger individuals with mental illness are at risk for depression, anxiety, obsessivecompulsive symptoms, and hostility (Barlas, Fistikci, Keyvan & Maner, 2013; Biegel et al., 2010; Mitsonis et al., 2012). Elevated levels of cortisol, a stress hormone, is also found in higher levels in these caregivers as compared to controls (Barker et al., 2012). In addition, the financial toll of care also leaves families economically vulnerable (Corsentino, Molinari, Gum, Roscoe, & Mills, 2008; Thompson, 2007). The extant literature suggests that caring for older individuals and for those with SMI can exert serious negative psychological consequences on family members providing care. Little is known, however, about the psychological impact of providing care for the growing number of family members confronting issues related to both older age and chronic psychiatric disorders. To address this gap, our exploratory study focused specifically on caregivers
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of older adults with SMI and the nature of psychological consequence that they experience. The study objectives were to (a) examine prevalence and extent of depression among familial caregivers of older adults with SMI and (b) develop a preliminary model explaining the combination of variables that influence depression among caregivers of older adults with SMI.
METHODOLOGY A cross-sectional research design was used for this study. Caregivers of older clients who had a diagnosis of SMI were approached to participate. Eligibility criteria included (a) being a familial caregiver of an older client (55 years and over) with a diagnosis of a SMI (defined as schizophrenia, schizoaffective disorder, bipolar disorder, or major recurrent depression) and (b) having provided instrumental or emotional support to their older relative with SMI within the last month. The purpose of the study was explained to older SMI clients receiving services at two mental health centers, a community-based agency and an out-patient Veteran’s Administration (VA) clinic. Clinic therapists explained the study to clients meeting study eligibility criteria, queried the clients as to the family member from whom they received the most support, and gained their consent to contact the identified family member. All interviews with family members (N = 96) were conducted via telephone by trained research assistants. Respondents were given $15 gift cards to a local grocery store as an incentive for study participation. Interviews lasted approximately 40 min. The study received IRB approval from the university and both clinics.
Measures MANIFESTATION
OF
STRESS: DEPRESSION
Six items comprising the depression dimension of the Brief Symptom Inventory-18 (Derogatis, 2001) were used to measure caregiver depression. Six-point Likert ratings (0 = not at all and 5 = extremely) were used. Possible scores ranged from 0 to 30 with a cut-off score of 7 being indicative of depression. Cronbach’s alpha was .87. SOURCES
OF
STRESS
Objective and subjective burden. A modified version of Tessler, Fisher, and Gamache’s (1992) family caregiver scales was used to collect data on objective and subjective caregiver burden. Types of care activities were slightly modified to better fit an older population. The objective burden scale measured the degree of help caregivers provided to their older relative
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in eight different activities of daily living (e.g., grooming, bathing, medication management). Five-point Likert ratings were used. Possible scores ranged from 8 to 40, with higher scores indicating greater amounts of help provided. Reliability alpha for this scale was .73. Subjective burden was measured through caregivers’ 4-point Likert ratings of the amount of burden they experienced while providing each of the eight care activities. Possible scores for the subjective scale ranged from 8 to 32. Cronbach’s alpha was .81. Caregivers were also queried as to the frequency of their contact (in-person or by phone) with the care recipient in last month. Six response choices ranged from daily to no contact. Mental health symptoms/problems dealing with symptoms. Tessler et al.’s (1992) family caregiver scales were also used to measure client mental health symptoms. Caregivers were asked whether or not their older relatives had experienced 23 different mental health symptoms during the past six months. Both positive (e.g., hearing voices, strange behavior) and negative symptoms (e.g., depression, withdrawal) were included. Participants were queried as to the level of difficulty they experienced dealing with each mental health symptom their family member displayed from 1 = mostly minor to 4 = mostly serious. If their family member did not display a specific symptom, a score of zero was assigned for that item. Possible scores range from 0 to 92. Cronbach’s alpha for mental health symptoms and for problems dealing with symptoms were .88 and .89, respectively. PROTECTIVE FACTORS Rewards. A three-item reward scale derived from The Caregiver Health Effects Study (Schulz et al., 1997) measured caregivers’ feelings of enjoyment and being appreciated in relationship to their involvement with the older adult with SMI. The reward scale used a 4-point Likert rating with 1 = never and 4 = often. Possible scores range from 3 to 12. Reliability α was .86. Social support. Four single-item questions from the Tessler et al.’s (1992) family caregiver scales were used to measure the amount of support caregivers received from friends, family, neighbors, and professionals in caregiving for their ill relative. A 5-point Likert rating was used for each item (1 = much less than needed and 5 = much too much). Self-reported health. A single-item measure with a 5-point likert rating was used to assess caregivers’ perception of their overall physical health (1 = excellent and 5 = poor). BACKGROUND/CONTEXTUAL VARIABLES Caregiver characteristics. Caregiver characteristics were measured in several areas. Demographic variables included age, gender, race, marital status, education, relationship to care recipient, and family income.
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Older SMI adult characteristics. Characteristics of the older adult with SMI included diagnosis, age, gender, marital status, and living arrangement.
Data Analysis Data analyses were conducted in the following order. First, descriptive statistics were used to summarize dependent and independent variables. Next, bivariate statistics (t-tests, correlations, ANOVA) were conducted to assess the significance of relationships between the dependent and independent variables. Scores on the Brief Symptom Inventory-18 depression subscale were nonnormally distributed (skewness = 1.31, SE = .25; kurtosis = .88, SE = .44). Therefore, conducting linear regression with this dependent variable would not be appropriate. Rather, the generalized linear model (GZLM) with a gamma distribution and a log link was used (Long & Freese, 2006) to explore the relative contribution of stress, protective, and contextual factors predictive of caregiver depression. However, this requires positive nonzero values, so prior to these analyses a value of 1 was added to each respondent’s depression score.
RESULTS Descriptive analyses were conducted for both the care providers and recipients. The majority of caregivers in this study were Caucasian women. Respondents’ ages ranged from 17 to 86 years (M = 54.4, SD = 14.4). The largest group of caregivers was spouses followed by adult children and siblings. Over half had completed high school; slightly more than one-third had some college education. More than 50% indicated total annual family incomes of less than $30,000. The vast majority reported having contact with their older SMI family member daily, and another 14.6 % indicated having contact several times per week. The ages of the older care recipients ranged from 55 to 92 years (M = 63.6 years, SD = 9.0). Just over half of older SMI clients were women. Care recipients’ mental health diagnoses were as follows: major recurrent depression (41.3%), bipolar disorder (25.4%), schizophrenia (25.4%), and other (7.9%). Less than half were currently married. Close to one-half lived in their own homes while one-third lived with the caregiving respondent (Table 1). VA clinic clients were significantly more likely to be men. No other differences between VA and non-VA clients were found. Caregivers reported significant areas of distress in their caregiving roles. Twenty-five percent scored at or above the clinical cut-off for depression with depression scores ranging from 0 to 22 (M = 4.7, SD = 5.7). In addition, caregivers reported aspects of both objective and subjective burden associated with their role. All caregivers reported assisting their older
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Predictors of Depression Among Caregivers TABLE 1 Caregiver and Care Recipient Demographics % or M (SD) Caregiver Age Gender (Female) Race Caucasian African American Other Relationship to care recipient Spouse Adult child Sibling Other Income ( High school Married (Yes) Amount of contact with care recipient Daily Several times/week Weekly Several times per month Care recipient Age Diagnosis Major recurrent depression Schizophrenia Bipolar disorder Other Gender (Female) Education < High school High school > High school Married (Yes) Living situation Own home With caregiver Other
54.4 (14.4) 76.0 76.8 21.1 2.1 35.4 28.1 18.8 17.7 52.9 29.5 28.4 42.1 59.4 76.0 14.6 5.2 4.2 63.6 (9.0) 41.3 25.4 25.4 7.9 51.0 29.5 43.2 27.3 41.7 47.9 37.5 14.6
family member with aspects of their daily functioning. The amount of help caregivers provided varied greatly (8–40), with the typical caregiver delivering a moderate amount of help (M = 21.9, SD = 7.6). Caregivers provided the greatest level of assistance to their relatives with shopping (M = 3.3, SD = 1.5), transportation (M = 3.0, SD = 1.7), housework (M = 2.9, SD = 1.5), and meal preparation (M = 2.9, SD = 1.5). Although the level of subjective burden reported by family members ranged from none at all to a moderate amount, overall subjective burden was relatively low (M = 10.4,
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SD = 6.4). The activities that the caregivers perceived as most burdensome were helping older relatives find something to do and providing assistance with grooming, bathing, and dressing. Caregivers indicated that their older SMI relatives exhibited a substantial number of mental health symptoms (M = 12.2, SD = 5.0). Clients displayed a greater number of negative (M = 5.9, SD = 2.3) than positive (M = 3.5, SD = 2.3) symptoms. The most common symptoms, in order of prevalence, were depression, being slow at doing things, lacking energy, being worried, and having difficulty thinking. Overall, caregivers reported a moderate amount of problems dealing with their older family members’ psychiatric symptoms (M = 32.2, SD = 17.5). However, 24% of all caregivers acknowledged a sometimes to mostly serious level of problems. The psychiatric symptoms exhibited by the care recipients that posed the greatest problems for the caregivers were all negative (e.g., depression, being worried, being slow at doing things, and withdrawal). In spite of the stresses, the caregivers reported fairly high levels of rewarding interactions with their older SMI family members. In particular, the caregivers reported enjoying their involvement with their relative (M = 3.3, SD = .72), feeling good as a result of their involvement (M = 3.5, SD = .68), and feeling appreciated because of their involvement (M = 3.3, SD = .85). Caregivers noted very low levels of social support. Respondents stated that they received less support than needed from their relative’s mental health professional (M = 2.5, SD = .85) and from their family (M = 2.1, SD = .87), friends (M = 2.0, SD = .97), and neighbors (M = 1.7, SD = .91). In general, caregivers rated their health as being good (M = 3.1, SD = 1.0). However, over one-third indicated that their health fell in the poor to fair range.
Bivariate Analyses Bivariate analyses were conducted to identify variables associated with caregiver depression. Multiple background/contextual variables were significantly related to higher levels of depression. Women and spouses reported significantly more depressive symptoms. Caregiver income (< $30,000), and marital status (married) were also significantly associated with higher levels of depression, but caregiver race, age, and educational status were not. Those providing care for male clients reported greater levels of depression (M = 7.1, SD = 6.1) than did those caring for women (M = 2.4, SD = 4.0). Stressor variables significantly related to caregiver depression included the number of psychiatric symptoms exhibited by the care recipient, the degree of problems experienced by the respondent due to the care recipient’s psychiatric symptoms, and subjective burden. No significant relationship between objective burden and caregiver depression was found.
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Predictors of Depression Among Caregivers
TABLE 2 Demographic, Stress, and Protective Factors Associated With Caregiver Depression Depression Factors Caregiver’s gender Female Male Relationship to older client Spouse Child Sibling Other Caregiver’s income < $30,000 ≥ $30,000 Married Yes No Older SMI client gender Female Male Number psychiatric Sxs Symptom related problems Subjective burden Caregiver rewards Caregiver health
n
M
SD
χ 2/ r 7.6∗∗
73 23
5.4 2.3
6.0 3.5
34 27 18 17
7.3 3.5 1.9 4.1
6.9 4.5 2.9 5.1
46 41
6.5 2.7
6.3 4.2
57 39
6.1 2.6
6.4 3.5
49 47 96 96 96 96 96
2.4 7.1
4.0 6.1
17.0∗∗∗
13.0∗∗∗ 11.7∗∗∗ 25.5∗∗∗ .21∗ .25∗ .32∗∗ −.23∗ .30∗∗
Note. SMI = severe mental illness. ∗ p
Predictors of Depression Among Caregivers of Older Adults With Severe Mental Illness SHERRY M. CUMMINGS College of Social Work, University of Tennessee, Nashville, Tennessee, USA
NANCY P. KROPF School of Social Work, Georgia State University, Atlanta, Georgia, USA
Caregivers of older persons with severe mental illness (SMI) contend with the double challenge of providing assistance related to both the psychiatric condition and older age of their family member. Study explored factors influencing negative psychological outcomes experienced by caregivers (n = 96) of older adults with SMI. One-quarter of caregivers scored at or above the clinical point for depression. Low income, care recipient gender, poor health, problems dealing with care recipient’s symptoms and the interaction of health and problems dealing with symptoms were associated with higher rates of depression. Implications for service provision and future research are discussed. KEYWORDS caregiving, depression, severe mental illness
Research indicates that caregivers of persons with serious psychiatric disorders bear enormous social and psychological consequences as a result of their care responsibilities (Mitsonis et al., 2012; Saunders, 2003). As the aging population increases, the subpopulation of older adults with a serious mental illness (SMI) is also rising. Although the term severe mental illness may refer to a variety of mental health disorders, typically illnesses classified as SMI include schizophrenia and schizophrenia-related disorders, bipolar disorder, major recurrent depressive disorder, and personality disorders (Cummings & Kropf, 2011). Current estimates suggest that about 1.4% of the US population
Received 15 January 2014; revised 13 October 2014; accepted 16 October 2014. Address correspondence to Sherry M. Cummings, University of Tennessee, College of Social Work, 193 E. Polk Avenue, Nashville, TN 37210, USA. E-mail: [email protected] 253
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have SMI and are over age 65 (Hudson, 2012). As the baby boom generation ages, challenges in meeting the increased mental health needs of the older population are also expected to increase. Unfortunately, mental health needs of older adults continue to be overlooked in treatment and policy arenas (Friedman, Williams, Kidder, & Furst, 2013). Caregiving for older adults with SMI is a challenging role, but one that has received scant attention from researchers and practitioners. The intersection of the aging process with the SMI condition creates substantial difficulties in care provision, which has been termed the “double demand for care” (Cummings & MacNeil, 2008, p. 56). Compared to their counterparts without psychiatric disorders, older adults with SMI have more health-related challenges. In addition, those with a mental illness and/or addiction are more likely to have multiple chronic illnesses (Lin, Zhang, Leung, & Clark, 2011). Due to the nature of some psychiatric conditions, persons with SMI may also have compromised the social, financial, and emotional resources that are needed in later life (Shepherd et al., 2012). As a result, the demand for assistance from those family members who are available to provide care is often heightened. Research on care provision indicates that stressful situations lead to both physical and mental health problems for caregivers, yet little is known about the level or consequences of the stress experienced by caregivers of older adults with SMI. The general literature on caring for older individuals indicates that care provision can result in negative outcomes for the caregiver, including depression (Smith, Williamson, Miller, & Schulz, 2011), burden (Ornstein & Gaugler, 2012), and increased health concerns (Hoffman, Lee, & Mendez-Luck, 2012). Likewise, studies on caregivers of younger persons with SMI indicate increased caregiver distress and burden (Kim et al., 2007; MöllerLeimkühler, 2005). The purpose of this study was to examine the extent and predictors of depression among caregivers of older adults with SMI.
CONCEPTUAL MODEL The conceptual model guiding this study was the Stress-Process Model (SPM; Pearlin, Mullan, Semple, & Skaff, 1990). This model was used as a framework for conceptualizing constructs to be explored in the study and organizing variables for inclusion in the analytic model. SPM has been used extensively in caregiving research and provides a basis for examining the experience of caring for older adults with SMI. The model includes four major components that predict and explain stressful caregiver experiences. Background and context of stress refers to sociodemographic characteristics that may either directly or indirectly influence stressful outcomes for the care providers. Stress, or burden, results from objective factors in a person’s environment coupled with a negative appraisal of these factors. Protective factors, such
Predictors of Depression Among Caregivers
255
as coping capacities and social resources, help to ameliorate the deleterious effects of stressors. Manifestations of stress often include impaired physical health and negative psychological symptoms such as depression and anxiety.
CARE PROVISION IN AGING AND SMI Although a vast literature exists on care provision for older adults, there is a paucity of research on care for an older adult with SMI. Using the Stress Process Model, literature on care of older adults, in general, is reviewed. In areas where there is research on care for younger adults with SMI, these studies are also included.
Background and Context of Care The literature on both aging and SMI indicates that challenging conditions of care provision create a higher level of stress for the caregiver. Research on later life indicates that women caring for older adults have higher levels of caregiving burden or depression than their male counterparts (Davies, Sridhar, Newkirk, Beaudreau, & O’Hara, 2012; Sorensen & Conwett, 2011). Spousal caregivers often experience greater negative outcomes of care than do adult children (Covinsky et al., 2003; Zivin & Christakis, 2007). Additionally, care providers who have little choice in assuming caregiving report the highest level of stress (Schulz et al., 2012). Similarly, the context of caregiving for an individual with SMI also involves significant challenges. In addition to the psychiatric conditions, family members often have to deal with other difficult situations such as erratic, violent behavior and substance abuse (Biegel, Katz-Saltzman, Meeks, Brown, & Tracy, 2010; Thompson, 2007). Financial and resource issues are also challenges for caregiving families who often bear living and treatment expenses for the person with SMI (Shepherd et al., 2012; Tsang, Tam, Chan, & Chang, 2003). Unfortunately, poorly coordinated or nonexistent services for people with SMI may add to the difficulties experienced by families (Crowe & Lyness, 2014; Cummings, 2009). The context and conditions of care lead many caregivers to feel unprepared and alone in their caregiving role (Jönsson, Skärsäter, Wijk, & Danielson, 2011; Stjernswärd, & Östman, 2008). The manifestation of caregiving stress has cumulative adverse consequences. As Barker, Greenberg, Seltzer, and Almeida (2012) reported, elevated cortisol levels found in parents of sons and daughters with SMI can translate into negative health conditions over time. Other research compared caregiving experiences of older parents of adult children with mental illnesses, intellectual disabilities, or healthy controls. Parents of adults with SMI had poorer health and psychological functioning than the other
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groups (Ghosh, Greenberg, & Seltzer, 2012). In addition, parents who were caregiving for SMI adult children were more likely to have a spouse that became disabled, as well. Researchers have suggested that these findings provide “further evidence of the wear and tear of long-term caregiving” (Ghosh et al., 2012, p. 1122) for parents with an SMI adult child.
Objective and Subjective Burden Objective burden relates to the concrete demands or responsibilities of care, such as level of assistance provided or the number of hours spent in caregiving. In studies of caregiving for adults in general, objective burden has been related to care recipient behaviors, to cognitive and functional impairments, and to coresidential living arrangements (Savundranayagam, Montgomery, & Kosloski, 2011; Wolfs, Kessels, Severens, Brouwer, de Vugt, Verhey, & Dirksen, 2012). More specific to mental illness, objective burden has been associated with the level of caregiving tasks assumed, increases in care demands over time, and role overload for SMI care providers (Saunders, 2003; Song, Mailick & Greenberg, 2014). Studies of younger persons with SMI indicate that the clinical features of the psychiatric conditions significantly contribute to caregiver distress. These features include both positive (e.g., hallucinations and delusions) and negative (e.g., depression, withdrawal, lethargy) symptoms, as well as the frequency of behavioral problems (Mitsonis et al., 2012; Saunders, 2003). Subjective burden is related to the appraisal or experience of care. Negative appraisal among caregivers of older adults has been associated with caregiver characteristics such as younger age, relationship, low levels of education, and care recipient behavioral problems (Kim, et al., 2007; Reinares et al., 2006). A study of caregivers of older adults with SMI also found that provision of higher levels of assistance with functional activities of daily living, increased care recipient symptoms, and caregiver income were predictive of subjective burden (Cummings & MacNeil, 2008). Caregivers of younger SMI adults often experience subjective burden related to the illness symptoms, role dysfunction, household disruption and patient diagnosis (Möller-Leimkühler, 2005; Reinares et al., 2006). In addition, coresidence increases levels of subjective burden for the care providers (Aschbrenner, Greenberg, Allen, & Seltzer, 2010). Beliefs about the expectation of care (e.g., what should be done, how services should work) are also predictors of subjective burden (Van der Voort, Goossens, & Van Der Bijl, 2007). Regardless of the role relationship, caregivers of persons with SMI perceive that they have an obligation to care for their family member. Although some fulfill this task willingly, other caregivers feel that it is an obligation and perceived it as burdensome (Rowe, 2012). For spousal caregivers, commitment to the relationship (e.g., staying married to the person with SMI)
Predictors of Depression Among Caregivers
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is a complex and dynamic experience (Jungbauer, Wittmund, Dietrich, & Angermeyer, 2004; Lawn & McMahon, 2014). Unlike parents who may see their connection to a son or daughter with SMI as indissolvable, spouses continually reexamine, and often struggle, with decisions about remaining in the partnership.
Protective Factors Factors that ameliorate the burdens and stress of care include perceived social support for the care provider, and a positive relationship between caregiver and recipient (Pinquart, & Sörensen, 2003; Wilks & Croom, 2008). High levels of religiosity also served as a protective factor for the caregiver (Morano & King, 2005). In spite of the demands, caregivers of both older adults and those with SMI report rewards and benefits that buffer the amount of stress that is experienced. Some caregivers report a higher level of empathy and awareness about the challenges of living as a person with a disability, and experience a sense of pride in their relationship with the person who has SMI (Chen & Lukens, 2011).
Manifestation of Stress From the vast literature on care provision, there is a clear understanding that caregiving can result in negative outcomes on caregiver functioning, especially in health and mental health domains. Spouses who watch their loved one experience suffering as a result of their health problems have increased heart and blood pressure rates themselves (Monin et al., 2010). Likewise, caregiving has adverse impacts on mental health functioning, with caregivers experiencing increased depression and anxiety levels (Sorensen & Conwett, 2011; Vitaliano, Zhang, & Scanlan, 2003). Caring for an individual with SMI can also result in adverse outcomes for care providers. Existing research reveals that care providers of younger individuals with mental illness are at risk for depression, anxiety, obsessivecompulsive symptoms, and hostility (Barlas, Fistikci, Keyvan & Maner, 2013; Biegel et al., 2010; Mitsonis et al., 2012). Elevated levels of cortisol, a stress hormone, is also found in higher levels in these caregivers as compared to controls (Barker et al., 2012). In addition, the financial toll of care also leaves families economically vulnerable (Corsentino, Molinari, Gum, Roscoe, & Mills, 2008; Thompson, 2007). The extant literature suggests that caring for older individuals and for those with SMI can exert serious negative psychological consequences on family members providing care. Little is known, however, about the psychological impact of providing care for the growing number of family members confronting issues related to both older age and chronic psychiatric disorders. To address this gap, our exploratory study focused specifically on caregivers
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of older adults with SMI and the nature of psychological consequence that they experience. The study objectives were to (a) examine prevalence and extent of depression among familial caregivers of older adults with SMI and (b) develop a preliminary model explaining the combination of variables that influence depression among caregivers of older adults with SMI.
METHODOLOGY A cross-sectional research design was used for this study. Caregivers of older clients who had a diagnosis of SMI were approached to participate. Eligibility criteria included (a) being a familial caregiver of an older client (55 years and over) with a diagnosis of a SMI (defined as schizophrenia, schizoaffective disorder, bipolar disorder, or major recurrent depression) and (b) having provided instrumental or emotional support to their older relative with SMI within the last month. The purpose of the study was explained to older SMI clients receiving services at two mental health centers, a community-based agency and an out-patient Veteran’s Administration (VA) clinic. Clinic therapists explained the study to clients meeting study eligibility criteria, queried the clients as to the family member from whom they received the most support, and gained their consent to contact the identified family member. All interviews with family members (N = 96) were conducted via telephone by trained research assistants. Respondents were given $15 gift cards to a local grocery store as an incentive for study participation. Interviews lasted approximately 40 min. The study received IRB approval from the university and both clinics.
Measures MANIFESTATION
OF
STRESS: DEPRESSION
Six items comprising the depression dimension of the Brief Symptom Inventory-18 (Derogatis, 2001) were used to measure caregiver depression. Six-point Likert ratings (0 = not at all and 5 = extremely) were used. Possible scores ranged from 0 to 30 with a cut-off score of 7 being indicative of depression. Cronbach’s alpha was .87. SOURCES
OF
STRESS
Objective and subjective burden. A modified version of Tessler, Fisher, and Gamache’s (1992) family caregiver scales was used to collect data on objective and subjective caregiver burden. Types of care activities were slightly modified to better fit an older population. The objective burden scale measured the degree of help caregivers provided to their older relative
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in eight different activities of daily living (e.g., grooming, bathing, medication management). Five-point Likert ratings were used. Possible scores ranged from 8 to 40, with higher scores indicating greater amounts of help provided. Reliability alpha for this scale was .73. Subjective burden was measured through caregivers’ 4-point Likert ratings of the amount of burden they experienced while providing each of the eight care activities. Possible scores for the subjective scale ranged from 8 to 32. Cronbach’s alpha was .81. Caregivers were also queried as to the frequency of their contact (in-person or by phone) with the care recipient in last month. Six response choices ranged from daily to no contact. Mental health symptoms/problems dealing with symptoms. Tessler et al.’s (1992) family caregiver scales were also used to measure client mental health symptoms. Caregivers were asked whether or not their older relatives had experienced 23 different mental health symptoms during the past six months. Both positive (e.g., hearing voices, strange behavior) and negative symptoms (e.g., depression, withdrawal) were included. Participants were queried as to the level of difficulty they experienced dealing with each mental health symptom their family member displayed from 1 = mostly minor to 4 = mostly serious. If their family member did not display a specific symptom, a score of zero was assigned for that item. Possible scores range from 0 to 92. Cronbach’s alpha for mental health symptoms and for problems dealing with symptoms were .88 and .89, respectively. PROTECTIVE FACTORS Rewards. A three-item reward scale derived from The Caregiver Health Effects Study (Schulz et al., 1997) measured caregivers’ feelings of enjoyment and being appreciated in relationship to their involvement with the older adult with SMI. The reward scale used a 4-point Likert rating with 1 = never and 4 = often. Possible scores range from 3 to 12. Reliability α was .86. Social support. Four single-item questions from the Tessler et al.’s (1992) family caregiver scales were used to measure the amount of support caregivers received from friends, family, neighbors, and professionals in caregiving for their ill relative. A 5-point Likert rating was used for each item (1 = much less than needed and 5 = much too much). Self-reported health. A single-item measure with a 5-point likert rating was used to assess caregivers’ perception of their overall physical health (1 = excellent and 5 = poor). BACKGROUND/CONTEXTUAL VARIABLES Caregiver characteristics. Caregiver characteristics were measured in several areas. Demographic variables included age, gender, race, marital status, education, relationship to care recipient, and family income.
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Older SMI adult characteristics. Characteristics of the older adult with SMI included diagnosis, age, gender, marital status, and living arrangement.
Data Analysis Data analyses were conducted in the following order. First, descriptive statistics were used to summarize dependent and independent variables. Next, bivariate statistics (t-tests, correlations, ANOVA) were conducted to assess the significance of relationships between the dependent and independent variables. Scores on the Brief Symptom Inventory-18 depression subscale were nonnormally distributed (skewness = 1.31, SE = .25; kurtosis = .88, SE = .44). Therefore, conducting linear regression with this dependent variable would not be appropriate. Rather, the generalized linear model (GZLM) with a gamma distribution and a log link was used (Long & Freese, 2006) to explore the relative contribution of stress, protective, and contextual factors predictive of caregiver depression. However, this requires positive nonzero values, so prior to these analyses a value of 1 was added to each respondent’s depression score.
RESULTS Descriptive analyses were conducted for both the care providers and recipients. The majority of caregivers in this study were Caucasian women. Respondents’ ages ranged from 17 to 86 years (M = 54.4, SD = 14.4). The largest group of caregivers was spouses followed by adult children and siblings. Over half had completed high school; slightly more than one-third had some college education. More than 50% indicated total annual family incomes of less than $30,000. The vast majority reported having contact with their older SMI family member daily, and another 14.6 % indicated having contact several times per week. The ages of the older care recipients ranged from 55 to 92 years (M = 63.6 years, SD = 9.0). Just over half of older SMI clients were women. Care recipients’ mental health diagnoses were as follows: major recurrent depression (41.3%), bipolar disorder (25.4%), schizophrenia (25.4%), and other (7.9%). Less than half were currently married. Close to one-half lived in their own homes while one-third lived with the caregiving respondent (Table 1). VA clinic clients were significantly more likely to be men. No other differences between VA and non-VA clients were found. Caregivers reported significant areas of distress in their caregiving roles. Twenty-five percent scored at or above the clinical cut-off for depression with depression scores ranging from 0 to 22 (M = 4.7, SD = 5.7). In addition, caregivers reported aspects of both objective and subjective burden associated with their role. All caregivers reported assisting their older
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Predictors of Depression Among Caregivers TABLE 1 Caregiver and Care Recipient Demographics % or M (SD) Caregiver Age Gender (Female) Race Caucasian African American Other Relationship to care recipient Spouse Adult child Sibling Other Income ( High school Married (Yes) Amount of contact with care recipient Daily Several times/week Weekly Several times per month Care recipient Age Diagnosis Major recurrent depression Schizophrenia Bipolar disorder Other Gender (Female) Education < High school High school > High school Married (Yes) Living situation Own home With caregiver Other
54.4 (14.4) 76.0 76.8 21.1 2.1 35.4 28.1 18.8 17.7 52.9 29.5 28.4 42.1 59.4 76.0 14.6 5.2 4.2 63.6 (9.0) 41.3 25.4 25.4 7.9 51.0 29.5 43.2 27.3 41.7 47.9 37.5 14.6
family member with aspects of their daily functioning. The amount of help caregivers provided varied greatly (8–40), with the typical caregiver delivering a moderate amount of help (M = 21.9, SD = 7.6). Caregivers provided the greatest level of assistance to their relatives with shopping (M = 3.3, SD = 1.5), transportation (M = 3.0, SD = 1.7), housework (M = 2.9, SD = 1.5), and meal preparation (M = 2.9, SD = 1.5). Although the level of subjective burden reported by family members ranged from none at all to a moderate amount, overall subjective burden was relatively low (M = 10.4,
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SD = 6.4). The activities that the caregivers perceived as most burdensome were helping older relatives find something to do and providing assistance with grooming, bathing, and dressing. Caregivers indicated that their older SMI relatives exhibited a substantial number of mental health symptoms (M = 12.2, SD = 5.0). Clients displayed a greater number of negative (M = 5.9, SD = 2.3) than positive (M = 3.5, SD = 2.3) symptoms. The most common symptoms, in order of prevalence, were depression, being slow at doing things, lacking energy, being worried, and having difficulty thinking. Overall, caregivers reported a moderate amount of problems dealing with their older family members’ psychiatric symptoms (M = 32.2, SD = 17.5). However, 24% of all caregivers acknowledged a sometimes to mostly serious level of problems. The psychiatric symptoms exhibited by the care recipients that posed the greatest problems for the caregivers were all negative (e.g., depression, being worried, being slow at doing things, and withdrawal). In spite of the stresses, the caregivers reported fairly high levels of rewarding interactions with their older SMI family members. In particular, the caregivers reported enjoying their involvement with their relative (M = 3.3, SD = .72), feeling good as a result of their involvement (M = 3.5, SD = .68), and feeling appreciated because of their involvement (M = 3.3, SD = .85). Caregivers noted very low levels of social support. Respondents stated that they received less support than needed from their relative’s mental health professional (M = 2.5, SD = .85) and from their family (M = 2.1, SD = .87), friends (M = 2.0, SD = .97), and neighbors (M = 1.7, SD = .91). In general, caregivers rated their health as being good (M = 3.1, SD = 1.0). However, over one-third indicated that their health fell in the poor to fair range.
Bivariate Analyses Bivariate analyses were conducted to identify variables associated with caregiver depression. Multiple background/contextual variables were significantly related to higher levels of depression. Women and spouses reported significantly more depressive symptoms. Caregiver income (< $30,000), and marital status (married) were also significantly associated with higher levels of depression, but caregiver race, age, and educational status were not. Those providing care for male clients reported greater levels of depression (M = 7.1, SD = 6.1) than did those caring for women (M = 2.4, SD = 4.0). Stressor variables significantly related to caregiver depression included the number of psychiatric symptoms exhibited by the care recipient, the degree of problems experienced by the respondent due to the care recipient’s psychiatric symptoms, and subjective burden. No significant relationship between objective burden and caregiver depression was found.
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TABLE 2 Demographic, Stress, and Protective Factors Associated With Caregiver Depression Depression Factors Caregiver’s gender Female Male Relationship to older client Spouse Child Sibling Other Caregiver’s income < $30,000 ≥ $30,000 Married Yes No Older SMI client gender Female Male Number psychiatric Sxs Symptom related problems Subjective burden Caregiver rewards Caregiver health
n
M
SD
χ 2/ r 7.6∗∗
73 23
5.4 2.3
6.0 3.5
34 27 18 17
7.3 3.5 1.9 4.1
6.9 4.5 2.9 5.1
46 41
6.5 2.7
6.3 4.2
57 39
6.1 2.6
6.4 3.5
49 47 96 96 96 96 96
2.4 7.1
4.0 6.1
17.0∗∗∗
13.0∗∗∗ 11.7∗∗∗ 25.5∗∗∗ .21∗ .25∗ .32∗∗ −.23∗ .30∗∗
Note. SMI = severe mental illness. ∗ p
