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Caregiver Burden and DepressiveSymptomatologyNorm O'Rourke PhD aa Gerontology Research Centre and Programs , Simon FraserUniversity at Harbour Centre , Vancouver, (BC), Canadab The Centre on Aging and Department of Psychology , University ofVictoria , Sedgewick Building #A104, PO Box 1700 STN CSC, Victoria,(BC), CanadaPublished online: 03 Oct 2008.

To cite this article: Norm O'Rourke PhD (2004) Caregiver Burden and Depressive Symptomatology,Clinical Gerontologist, 27:4, 41-52, DOI: 10.1300/J018v27n04_05

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Caregiver Burdenand Depressive Symptomatology:

The Association Between ConstructsOver Time

Norm O’Rourke, PhDHolly A. Tuokko, PhD

ABSTRACT. The current study examines the association between bur-den and depression symptoms among cohabiting caregivers recruited aspart of a longitudinal study of dementia incidence and patterns of care

Norm O’Rourke is affiliated with Gerontology Research Centre and Programs, Si-mon Fraser University at Harbour Centre, Vancouver (BC), Canada.

Holly A. Tuokko is affiliated with the Centre on Aging and Department of Psychol-ogy, Sedgewick Building #A104, University of Victoria, PO Box 1700 STN CSC, Vic-toria (BC), Canada.

Address correspondence to: Norm O’Rourke, PhD, Gerontology Research Centre,Simon Fraser University at Harbour Centre, #2800-515 West Hastings Street, Vancouver (BC), V6B 5K3 Canada (E-mail: ORourke@sfu.ca).

The Canadian Study of Health and Aging (CSHA) was funded by the Seniors’ Inde-pendence Research Program, through the National Health Research and DevelopmentProgram (NHRDP) of Health Canada (Project No. 6606-3954-MC[S]).

Additional funding was provided by Pfizer Canada Incorporated through the Medi-cal Research Council/Pharmaceutical Manufacturers Association of Canada HealthActivity Program, the NHRDP (Project No. 6603-1417-302 [R]), Bayer Incorporated,the British Columbia Health Research Foundation (BCHRF Projects No. 38 [93-2] &No. 34 [96-1]).

The CSHA was coordinated through the University of Ottawa and the Division ofAging and Seniors, Health Canada. The authors wish to express our appreciation to allstaff across Canada involved in the CSHA.

Clinical Gerontologist, Vol. 27(4) 2004http://www.haworthpress.com/web/CG

2004 by The Haworth Press, Inc. All rights reserved.Digital Object Identifier: 10.1300/J018v27n04_05 41

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(Canadian Study of Health and Aging). Patterns of change were exam-ined among informal caregivers among those continuing to live withcommunity dwelling care recipients (five years subsequent to initialstudy participation, N = 137). With control for demographic variablesand patient illness features, regression analyses suggest that burden ex-ists as a significant antecedent of depressive symptomatology (subse-quent to control for baseline depressive symptoms; F[11,125] = 3.71, p <.05). The reverse association, however, was not observed (again, subse-quent to control for demographic variables, patient illness features, andbaseline burden; F[11,125] = 1.88, ns). These findings support the oper-ational definition of caregiver burden in which this construct is under-stood as a form of negative appraisal of current and future ability to copewith care demands. [Article copies available for a fee from The Haworth Docu-ment Delivery Service: 1-800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress.com> © 2004 by The HaworthPress, Inc. All rights reserved.]

KEYWORDS. Burden, dementia, depression, informal caregivers

In recent years, caregiver burden has emerged among the most com-monly studied topics in clinical gerontology. This level of interest, inpart, can be attributed to the exponential increase in dementia preva-lence anticipated in coming years. For instance, the incidence rates ofdisorders such as Alzheimer disease are expected to almost double withinthe next 10 years (Canadian Study of Health and Aging Working Group,1994a). Accordingly, Brown, Potter, and Foster (1990) contend that as-sessment and intervention to treat burden is required to facilitate main-tenance of persons with dementia in their homes and communities.

George and Gwyther have defined caregiver burden as the, “. . . phys-ical, psychological or emotional, social and financial problems that canbe experienced by family members caring for impaired older adults”(1986, p. 253). This seemingly straightforward definition entails a widearray of experience encompassing both objective demands and per-ceived stressors (Stephens & Kinney, 1989). Certain authors have em-phasized the instrumental aspects of patient care (i.e., physical caretasks). The majority, however, view burden as an idiosyncratic, subjec-tive experience (Stommel, Given, & Given, 1990). This conceptual am-biguity has led various authors to describe the construct of caregiver bur-den as theoretically obscure (e.g., Braithwaite, 1992).

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One area in which confusion persists pertains to the relationship be-tween burden and depressive symptomatology. Whereas some viewburden as an antecedent of depression (e.g., Clyburn, Stones, Hadjista-vropoulos, & Tuokko, 2000; Lawton, Moss, Kleban, Glicksman, &Rovine, 1991; O’Rourke & Tuokko, 2000), others hold the contraryview (e.g., Vitaliano, Russo, Young, Teri, & Maiuro, 1991) such thatdepressive symptoms are assumed to present prior or concurrent withcaregiver burden. The current study seeks to address this question. Theassociation between depressive symptomatology and burden is exam-ined among caregivers cohabiting with persons with dementia. The pre-dictive validity of these constructs is examined over time controlling fordemographic variables, patient illness features, and baseline levels ofboth burden and depressive symptomatology.

METHOD

Participants

Care Recipients

Older adults were recruited as part of a national epidemiological studyof dementia prevalence in Canada. The methodology employed by theCanadian Study of Health and Aging is described in detail elsewhere(CSHA Working Group, 1994a). In brief, persons over 64 years of agewere randomly identified from governmental health records in all prov-inces (except Ontario where enumeration records were used). A total of9,008 community-dwelling older adults underwent clinical screeningduring which the Modified Mini-Mental State Examination (3MS;Teng & Chui, 1987) was administered. As compared to Folstein’s origi-nal Mini-Mental State Examination, the 3MS provides greater grada-tion of scores and covers a broader range of cognitive abilities (e.g.,abstract reasoning, generative naming). Possible 3MS scores rangefrom 0 to 100 with lower totals suggestive of cognitive impairment(Tombaugh, McDowell, Kristjansson, & Hubley, 1996).

Those unable to complete the 3MS and persons scoring below78/100 were invited to undergo clinical examination (N = 2,339). Onthe basis of all clinically relevant information, a consensus diagnosiswas reached by interdisciplinary teams composed of a physician,neuropsychologist, nurse, and/or psychometrician (Tuokko, Krist-jansson, & Miller, 1995).

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Caregivers

Primary caregivers were identified by patients and/or their familiesas the person most responsible for day-to-day decisions. A caregiverwas identified in all but seven cases (CSHA Working Group, 1994b).Of this total, 32 caregivers (2.8%) could not be contacted and 38 (3.4%)declined participation. Interviews were conducted by trained researchassistants who administered all study measures.

A follow-up wave of data collection (CSHA-II) was undertaken toexamine patterns of change in cognition and well-being of older adultsas well as the health and welfare of those who provide care (CSHAWorking Group, in press). All but 33 caregivers from Time 1 were lo-cated (4 years, 11 months on average after initial participation, SD = 99days). Inclusion in the current study was limited to caregivers who con-tinued to live in the same residence as care recipients. This provided asample of 137 caregivers (16 men, 121 women). This sample was fur-ther restricted to family or friends of persons with dementia (i.e., exclu-sion of paid or formal caregivers) as care provision is assumed to beinherently more distressing for those personally committed to the role.In other words, paid caregivers are assumed to represent a distinct popu-lation.

Measures

Patient Illness Features

Activities of Daily Living (ADLs). Caregivers were asked to rate care-recipients’ ability to perform 14 separate activities of daily living (bothself-maintenance and instrumental activities). This measure was takenfrom the Older Americans Resources and Services Questionnaire (Mul-tidimensional Functional Assessment of Older Adults; Fillenbaum,1988). Respondents were asked to rate each ADL along a 3-pointLikert-type scale (without help [0], some help [1], unable to do unaided[2]). The range of possible ADL scores is 0 to 28 with higher totals re-flecting greater impairment.

Dementia Behavior Disturbance (DBD) Scale. Caregivers were ad-ministered a separate measure to assess problematic behaviors directlyrelated to neurodegenerative illness. The Dementia Behavior Distur-bance Scale (DBD; Baumgarten, Becker, & Gauthier, 1990) consists of28 questions. Caregivers are asked to rate how frequently each behaviorhad occurred in the past week (e.g., “Hoards things for no obvious rea-

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son”; “Makes unwarranted accusations”). Responses are reported alonga 5-point Likert-type scale (never [0] to all of the time [4]). Possiblescores range from 0 to 112 with higher totals reflecting greater distur-bance.

In contrast to previous measures, the DBD was developed with a morenarrow definition of behavioral disturbance in order to focus upon thespecific manifestations of dementia syndromes. Items, therefore, do nottap functional and somatic symptoms nor cognitive impairment; Baum-garten and colleagues (1990) contend that these features are related toillness severity as opposed to behavioral disturbance.

From the initial validation study, responses to the DBD appear topossess optimal internal consistency (� = .83; Clark & Watson, 1995;DeVellis, 1991). Test-retest reliability over a two-week period was re-ported as r = .71 (Baumgarten et al., 1990). Construct validity has beenestablished relative to the Behavior and Mood Disturbance Scale as re-sponses to these two measures are strongly correlated (r = .73). Thesefindings suggest that responses to the DBD provide a valid and reliableindex of problematic behaviors attributable to neurodegenerative ill-ness.

Caregiver Variables

Demographic information was obtained at the time of initial partici-pation. These questions included the age of caregivers, years of formaleducation, marital status, and relationship to the index subject. Care-givers were also asked whether or not they had experienced a series ofhealth problems over the past year (i.e., allergies, chest problems, heartcondition, kidney disease, cancer, diabetes, high blood pressure, arthri-tis/rheumatism, digestive troubles, nervousness, stroke, insomnia). Acumulative variable was computed on the basis of endorsement of thesehealth conditions.

Center for Epidemiologic Studies-Depression Scale (CES-D). TheCES-D (Radloff, 1977) was administered at both baseline and fol-low-up. This measure asks respondents to rate the frequency of variousdepressive symptoms over the past week (e.g., “I had trouble keepingmy mind on what I was doing”; “I felt lonely”). Responses are recordedalong a 4-point Likert-type scale ranging from rarely or none of the time(0) to most or all of the time (3). Across older adult samples, internalconsistency of responses to the CES-D has been estimated to be withinoptimal parameters for both community and clinical samples (e.g., � =.85 to � = .91; Himmelfarb & Murrell, 1983). Among participants re-

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cruited for this study (full caregiver sample at baseline), � = .88 (CSHAWorking Group, 1994b).

Lewinsohn, Seeley, Roberts, and Allen (1997) contend that the util-ity of the CES-D is not compromised by age, gender, physical disease,or cognitive or physical impairment. Although developed and first vali-dated with general adult populations, the CES-D appears appropriatefor use with older adults (Lewinsohn et al., 1997; Radloff & Teri, 1986).

Burden Interview. The Burden Interview (BI; Zarit, Orr, & Zarit,1985) presents caregivers with a series of 22 questions regarding per-ceived strain in caring for persons with dementia. The degree to whichcaregivers endorse each item is rated along 5-point Likert-type scales.The range of possible BI scores is 0 to 88 with higher totals reflectinggreater burden. Reported reliability coefficients for responses to thefull-scale range from � = .88 (Hassinger, 1986) to � = .94 (O’Rourke &Wenaus, 1998).

RESULTS

Data were missing at both points of measurement (estimated at roughly5% of usable data from CSHA-I and CSHA-II). The PRELIS programwas used to estimate values for missing data (Jöreskog & Sörbom,1996). PRELIS imputes values on the basis of like-responses as op-posed to substituting mean item scores. This method is preferable tosubstitution with mean values as the latter can obscure between groupdifferences (Little & Rubin, 1987).

The gender composition of patient sample was proportionate (68men, 69 women). Consistent with prior research, however, the majorityof caregivers were female (121/137 or 88.3%). Spouses composed themajority of caregivers (47%) with a notable percentage of adult chil-dren (38%). The remainder self-identified as either friends or membersof the patients’ extended family (e.g., daughters-in-law, nieces, grand-children). Given this percentage from younger generations, it is not sur-prising that the average age of caregivers at Time 2 (M = 68.78 years,SD = 12.71) was lower than care recipients (M = 86.24 years, SD =6.80).

As evident from Table 1, levels of depressive symptomatology arerelatively low at both points. Although the level increases somewhatover time, the mean remains below the standard threshold of 16, sugges-tive of clinical significance (Radloff & Teri, 1986). At Time 1, 30% ofcaregivers score within clinical range whereas this percentage drops to

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19% at follow-up. These lower than generally reported symptom ratesare likely attributable to random recruitment of the CSHA sample.

Also of note, the mean level of reported burden declines over time.This observation would appear to support the adaptation hypothesis.According to Lazarus and Folkman (1984), persons are believed to ac-climate to role demands over time, employ more effective coping strate-gies, and adapt to stressors as a function of individual experiences (cf.Pushkar Gold, Feldman Reis, Markiewicz, & Andres, 1995; Rabins, Fitting,Eastham, & Zabora, 1990). Caregivers are thus believed to develop in-creased tolerance for chronic stressors and experience less burden (or atleast consistent distress despite progressive decline of one’s relative).Lower burden and the reduced percentage of caregivers in clinicalrange on the CES-D at Time 2 support the adaptation hypothesis.

Depressive Symptoms as a Predictor of Burden

Hierarchical regression was computed to ascertain the predictive va-lidity of depressive symptomatology relative to caregiver burden asmeasured 5 years in the future (i.e., the BI as the dependent variable). The

Norm O’Rourke and Holly A. Tuokko 47

TABLE 1. Descriptive Caregiver Features and Psychometric Properties of StudyVariables

M SD � Minimum Maximum

Age of Caregivers

Less than 55 years 22

Between 55 and 64 30

Between 65 and 74 35

Between 75 and 84 36

Over 84 years 14

Total 137 68.78 12.71 – 33 90

Years of Education (caregivers) 11.09 3.57 – 0 20

CES-D, Time 1 10.41 9.83 .89 0 41

CES-D, Time 2 9.93 11.80 .94 0 56

Burden Inventory, Time 1 24.70 17.58 .93 0 79

Burden Inventory, Time 2 17.61 14.95 .95 0 64

Note. CES-D = Centre for Epidemiologic Studies-Depression Scale. The correlation coefficient be-tween CES-D scores (Time 1 to Time 2) is r [137] = .51, p < .01; for Burden Interview scores, r [137] = .42,p < .01. Although the magnitude of the former is greater, the difference between coefficients doesnot attain statistical significance (t [134] = 1.34, ns).

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sample selected for this study is sufficient to guard against � or Type IIerrors where � = .05 assuming a moderate effect size (Cohen, 1992).

Baseline descriptive variables (age, sex, years of formal education,marital status, relationship to patient) were first entered to control fordemographic effects (R2 = .10, p < .01). Patient illness characteristics atTime 1 were entered next as covariates (inability to perform ADLs, de-mentia-related behaviors, cognitive impairment; �R2 = .04, p < .01). BIscores at baseline were next entered to control for initial caregiver bur-den (�R2 = .08, p < .01). Finally, the CES-D was entered leading to nosignificant increase in prediction of BI scores at Time 2 (�R2 = .01, ns).This finding suggests that depressive symptoms as measured at baselinedo not predict caregiver burden. In other words, depressive symptom-atology does not appear to be an antecedent of caregiver burden subse-quent to control for demographic variables, patient illness features, andbaseline burden (see Table 2).

Caregiver Burden as a Predictor of Depressive Symptoms

Hierarchical regression was again computed to examine the predic-tive validity of caregiver burden relative to future depressive symptom-atology (i.e., responses to the CES-D at Time 2 as the dependent vari-able). As before, baseline descriptive variables (age, sex, years of formaleducation, marital status, relationship to patient) accounted for a signif-icant portion of observed variance (R2 = .18, p < .01) as did patient ill-ness characteristics measured at Time 1 (inability to perform ADLs,dementia-related behaviors, cognitive impairment; �R2 = .07, p < .01).CES-D scores at baseline were next entered to control for initial depres-sive symptomatology (�R2 = .08, p < .01). Entry of BI scores as a finalstep lead to a significant increase in observed CES-D variance at Time 2(�R2 = .02, p = .05). In contrast to prior analyses, this finding suggeststhat burden exists as a significant antecedent of depression symptom-atology among caregivers. Thus, expressed burden would appear to be aharbinger of depressive symptoms among caregivers who cohabit withcare recipients over time (see Table 3).

DISCUSSION

The results of this study suggest that caregiver burden exists as a sig-nificant antecedent of depressive symptomatology among caregivers.In contrast, the reverse association was not observed (i.e., depressive

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symptoms at baseline did not predict subsequent burden). These find-ings are notable given the extended duration of measurement (approxi-mately 5 years) and rigorous control for demographic, patient illnessand initial levels of dysphoria (i.e., burden and depressive symptoms asmeasured at baseline).

The causal association whereby burden predicts depressive symptom-atology corresponds to Lazarus and Folkman’s cognitive phenomen -ological model as applied by Zarit (1990) to this population. Withincontext of this paradigm, burden is seen to result when a subjective de-termination is made that current and future resources are insufficient tocontend with role demands. Negative secondary appraisal or burden isbelieved to function as a portent of problematic physical and mentalhealth outcomes. The findings of the current study support this defini-tion. Caregiver burden appears to present prior (or concurrent) with de-pressive symptoms whereas the reverse association was not observed.

These results underscore the need to screen for caregiver burden. Notonly does this signal current role difficulties, but my herald further prob-lematic outcomes to come. Burden, therefore, should not be viewed as aninevitable outcome of caregiving, but an indication that intervention iswarranted to forestall future dysphoria (e.g., home support services, coun-seling).

Norm O’Rourke and Holly A. Tuokko 49

TABLE 2. Hierarchical Regression Analysis of Caregiver Burden at Time 2

Variables B SE B � F

Age of Caregiver �.14 .12 �.11 1.35

Caregiver Sex 6.21 4.23 .3 2.16

Relationship to Patient -.50 .41 �.12 1.50

Marital Status .90 1.15 .07 .61

Years of Education .42 .38 .10 1.24

Physical Health Conditions .14 .87 .02 .03

Activities of Daily Living .09 .24 .04 .15

Dementia Related Behaviors .03 .11 .01 .01

Patient Cognitive Status �3.65 2.63 �.16 1.92

Caregiver Burden, Time 1 .25 .11 .29 5.18*

Depressive Symptoms, Time 1 .26 .19 .17 1.88

*p < .05Note. R

2= .10 with inclusion of caregiver demographics (p < .01); �R

2= .04 subsequent to entry of

patient illness variables (p < .01); �R2

= .08 subsequent to inclusion of Burden Interview scores atbaseline (p < .01); �R

2= .01 subsequent to entry of the CES-D at baseline (depressive symptoms; ns).

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It must be noted that the findings of this study should not be inter-preted to indicate an association between burden and Major DepressiveDisorder as caregivers did not undergo diagnostic assessment at eitherpoint in time. Responses to the CES-D (and similar screening measures)do not classify caregivers as depressed or euthymic (Ford, Goode,Barrett, Harrell, & Haley, 1997); instead, results of the current study in-dicate an association between burden and depressive symptoms thatmay, or may not, be suggestive of clinical depression.

Despite this caution, the results of the current study are compellingdue to the composition of the sample examined. As noted, CSHA par-ticipants represent a randomly derived, national sample of patients andcaregivers. The findings of this study can thus be generalized with someconfidence.

Our findings appear to redress one aspect of the conceptual ambigu-ity regarding the construct of caregiver burden. Burden as expressed bycaregivers at one point in time would appear to predict future depressivesymptoms. It is hoped that further understanding of this association be-tween these constructs will foster greater consistency in the measure-ment and interpretation of burden among caregivers in future research.

50 CLINICAL GERONTOLOGIST

TABLE 3. Hierarchical Regression Analysis of Depressive Symptoms at Time 2

Variables B SE B � F

Age of Caregiver �.08 .08 �.09 1.04

Caregiver Sex .40 3.01 .01 .02

Relationship to Patient �.38 .29 �.11 1.71

Marital Status �.66 .82 �.06 .65

Years of Education .23 .27 .07 .75

Physical Health Conditions 1.01 .61 .16 2.70

Activities of Daily Living �.27 .17 �.17 2.53

Dementia Related Behaviors .05 .08 .07 .49

Patient Cognitive Status .98 1.87 .06 .28

Depressive Symptoms, Time 1 .31 .14 .26 5.43*

Caregiver Burden, Time 1 .15 .08 .23 3.71*

* p � .05Note. R

2= .18 with inclusion of caregiver demographics (p < .01); �R

2= .07 subsequent to entry of

patient illness variables (p < .01); �R2

= .08 subsequent to entry of depressive symptoms (CES-D)at baseline (p < .01); �R

2= .02 subsequent to inclusion of caregiver burden at baseline (p = .05).

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