Caregiver Burden Scale

Abstract

The Caregiver Burden Scale (CBS), developed by Sölve Elmståhl, Bo Malmberg, and Lena Annerstedt in 1996, is a multidimensional psychometric instrument constructed to evaluate the subjective and objective impact of providing informal care to chronically ill, disabled, or elderly individuals, with foundational validation established in longitudinal post-stroke cohorts. Comprising 22 items arranged across five empirically validated subscales—General Strain, Isolation, Disappointment, Emotional Involvement, and Environment—the CBS addresses the limitations of unidimensional burden measures by delineating affective, practical, interpersonal, and contextual domains of caregiver strain. Each item is evaluated along a standardized 4-point Likert-type response scale ranging from 1 (“Not at all”) to 4 (“Often”), generating individual subscale scores and an overall composite burden index. Psychometric evaluations demonstrate strong internal consistency, with global Cronbach’s alpha coefficients typically exceeding .87 to .93, and subscale reliabilities spanning .70 to .89 across heterogeneous neurological and geriatric samples. Construct validity is demonstrated through robust factor loadings, high convergent correlations with depressive symptomatology (CES-D), psychological distress (GHQ), and reciprocal negative correlations with health-related quality of life (SF-36). The instrument exhibits sensitivity to intervention-induced shifts in social support, caregiver respite, and functional recovery trajectories of patients. Consequently, the CBS remains a prominent instrument in neuropsychology, rehabilitation medicine, behavioral gerontology, and psychosocial healthcare research.

Keywords

Caregiver Burden Scale, informal caregiving, stroke rehabilitation, caregiver strain, psychometrics, emotional involvement, social isolation, psychological distress, health-related quality of life, factor analysis

Authors

The Caregiver Burden Scale was formulated and psychometrically validated by a multidisciplinary team of clinical gerontologists and medical researchers affiliated with Lund University and the Malmö University Hospital in Sweden:

• Sölve Elmståhl, MD, PhD: Professor Emeritus of Geriatric Medicine, Department of Clinical Sciences in Malmö, Geriatric Medicine, Faculty of Medicine, Lund University, and Skåne University Hospital, Malmö, Sweden.
• Bo Malmberg, PhD: Associate Professor and Senior Researcher in Gerontology, Institute of Gerontology, School of Health and Welfare, Jönköping University, Jönköping, Sweden.
• Lena Annerstedt, PhD: Clinical Psychologist and Senior Researcher, Department of Community Medicine and Rehabilitation, Lund University, Lund, Sweden.

Purpose

The primary purpose of the Caregiver Burden Scale is to furnish a comprehensive, multidimensional assessment of the multifaceted burdens experienced by family members and informal caregivers providing long-term home care for individuals with acquired neurological conditions, progressive cognitive disorders, and physical disabilities. When Elmståhl, Malmberg, and Annerstedt conceptualized the scale in the mid-1990s, clinical research predominantly treated caregiver distress as an undifferentiated, unitary phenomenon or relied heavily on indices that conflated objective caregiving tasks with subjective psychological reactions. The CBS was explicitly created to resolve these operational deficits by capturing subjective appraisals across distinctive emotional, practical, relational, and ecological spheres.

In clinical rehabilitation and outpatient geriatrics, the CBS functions as a diagnostic and triage tool to identify informal caregivers approaching psychological decompensation, clinical depression, or physical burnout. Caregivers frequently manage complex therapeutic regimens, behavioral disturbances, and functional dependency following cerebrovascular accidents, traumatic brain injuries, Parkinson’s disease, or dementia. Applying the scale allows clinical teams—including neuropsychologists, rehabilitation physicians, occupational therapists, and clinical social workers—to ascertain the exact etiology of the burden. For instance, high scores on the General Strain and Environment domains signal urgent requirements for home modifications, physical therapy assists, and respite services, whereas elevated scores on Emotional Involvement and Disappointment indicate an imperative need for specialized psychotherapy, cognitive-behavioral stress inoculation, or family systems counseling.

In empirical research, the CBS serves as a standard outcome measure in clinical trials assessing the efficacy of caregiver support protocols, psychoeducational interventions, pharmacological treatments targeting patient neuropsychiatric symptoms, and integrated community health networks. Its ability to distinguish subjective life dissatisfaction from environmental hurdles provides researchers with granular outcome metrics that avoid aggregate score masking, thereby improving the sensitivity and specificity of clinical investigations.

Psychological Construct

Caregiver burden is a complex biopsychosocial construct reflecting the physical, emotional, social, and financial consequences experienced by an individual caring for an impaired relative or friend. Rather than representing an inevitable, direct byproduct of patient impairment severity, caregiver burden is theoretically mediated by cognitive appraisals, relational dynamics, internal coping mechanisms, and contextual support structures. The Caregiver Burden Scale breaks this construct down into five correlated yet distinctive operational dimensions:

1. General Strain

General Strain reflects the pervasive, day-to-day depletion of physical, mental, and personal reserves directly linked to ongoing care obligations. This dimension measures chronic exhaustion, perceived loss of autonomy, physical deterioration, and perceived role overload. It encompasses operational items related to finding daily care logistics difficult to resolve, experiencing self-neglect, feeling tired and worn out, and perceiving personal time to be thoroughly consumed by the relative’s demands.

2. Isolation

The Isolation dimension quantifies the contraction of the caregiver’s external social network and the curtailment of recreational, vocational, and relational engagements outside the domestic caregiving dyad. Items within this factor evaluate the degree to which caregivers restrict social visits, experience diminished contact with friends and extended family, and encounter profound feelings of loneliness and existential disconnection attributable directly to the relative’s condition and care needs.

3. Disappointment

Disappointment reflects an existential and temporal appraisal of life disruption. It taps into the cognitive dissonance arising from the collision between anticipated life trajectory milestones (e.g., retirement plans, travel, marital intimacy) and the abrupt reality of intensive caregiving. Items gauge deep-seated feelings of unfair treatment by life, thwarted developmental expectations, and subjective feelings of loss regarding what should have transpired at their given stage of life.

4. Emotional Involvement

This subscale evaluates the emotional ambivalence, interpersonal conflict, shame, anger, and social embarrassment evoked by the care recipient’s neuropsychiatric manifestations or behavioral alterations. Care recipients with cerebrovascular pathology or neurodegenerative conditions often exhibit disinhibition, emotional lability, aggressive outbursts, or personality changes. This dimension quantifies the caregiver’s internalized distress, including feelings of humiliation, resentment, and moral anguish when managing socially disruptive or stigmatizing behaviors.

5. Environment

The Environment factor assesses external structural, architectural, and neighborhood barriers that impede caregiving activities. Unlike internal cognitive-emotional appraisals, this domain captures the physical frictions of the environment—such as steep staircases, inadequate bathroom facilities, cramped living quarters, and unsupportive local infrastructure—alongside ambient anxieties regarding whether one possesses adequate domestic accommodations and competency to deliver safe care.

Theoretical Framework

The theoretical architecture of the Caregiver Burden Scale is grounded in the transactional theory of stress and coping pioneered by Richard S. Lazarus and Susan Folkman (1984), integrated with Pearlin and colleagues’ (1990) Stress Process Model of family caregiving. Under the Lazarus and Folkman paradigm, stress is defined not strictly as an external stimulus or an internal physiological response, but rather as a dynamic relationship between the individual and the environment that is appraised as taxing or exceeding personal resources and endangering well-being.

Within this transactional framework, the objective demands of caregiving (e.g., assisting with activities of daily living, managing incontinence, navigating architectural barriers) represent potential primary stressors. However, these objective demands undergo primary appraisal, wherein the caregiver evaluates the personal meaning, threat level, and significance of the stressor (“Is my life permanently compromised?”; “Am I being treated unfairly?”), and secondary appraisal, wherein the caregiver assesses available resources, perceived self-efficacy, and potential coping options. The CBS subscales reflect the cognitive and emotional sequelae of these cognitive appraisals:

• Primary Stressors: The basic cognitive and physical limitations of the patient trigger subjective appraisals of direct exhaustion and logistical friction, captured by General Strain and Environment.
• Secondary Intrapsychic Strains: The restructuring of identity, personal expectations, and relational intimacy yields deep-seated affective strain, captured by Disappointment and Emotional Involvement.
• Secondary Role Strains: The attrition of occupational, familial, and community participation manifests in the psychological and relational constriction captured by Isolation.

Furthermore, the CBS incorporates ecological systems theory (Bronfenbrenner, 1979), acknowledging that caregiving takes place inside nested microsystems (the immediate physical home environment), mesosystems (family networks and neighbor interactions), and macrosystems (societal expectations and support structures). By explicitly integrating the Environment subscale, Elmståhl and colleagues extended traditional intrapsychic models to incorporate the built and spatial environment as a direct determinant of psychological strain.

Validity

The Caregiver Burden Scale has undergone extensive psychometric validation across multiple clinical populations, healthcare settings, and cultural contexts, establishing robust construct, convergent, discriminant, and predictive validity.

Construct and Factorial Validity

During the initial development and validation study by Elmståhl et al. (1996), which evaluated 144 primary caregivers of patients three years post-stroke, construct validity was established through principal components analysis with varimax rotation. The empirical extraction confirmed the five distinct dimensions (General Strain, Isolation, Disappointment, Emotional Involvement, and Environment), accounting for 64% of the total variance. Subsequent confirmatory factor analyses (CFA) in independent European, Asian, and Latin American validation studies have corroborated this five-factor structure, reporting favorable fit indices including Comparative Fit Index (CFI) values ranging from .91 to .96 and Root Mean Square Error of Approximation (RMSEA) values between .045 and .068.

Convergent and Concurrent Validity

Convergent validity is supported by strong, statistically significant correlations with established psychological assessment tools. The CBS total score correlates substantially with caregiver depressive symptomatology as measured by the Center for Epidemiologic Studies Depression Scale (CES-D; $r = .65$ to $.74, p < .001$) and the Hospital Anxiety and Depression Scale (HADS; $r = .58$ to $.69, p < .001$). Furthermore, the CBS exhibits significant inverse correlations with caregiver perceived health and quality of life measured via the Medical Outcomes Study Short-Form 36-Item Health Survey (SF-36), specifically within the Mental Health ($r = -.60$), Vitality ($r = -.64$), and Social Functioning ($r = -.58$) subscales.

Discriminant Validity

Discriminant validity has been demonstrated by the scale’s ability to differentiate between distinct subgroups of caregivers. Caregivers providing round-the-clock intensive care for patients with severe neurological deficits (Barthel Index < 50) obtain significantly higher scores across General Strain and Isolation compared to caregivers supporting patients with mild functional independence ($p < .001$). Importantly, the scale successfully differentiates subjective caregiver distress from mere patient physical disability indices, demonstrating that high functional impairment does not invariably lead to high emotional involvement or disappointment if perceived coping resources are adequate.

Predictive Validity

Longitudinal investigations demonstrate that elevated baseline scores on the CBS, particularly within the General Strain and Isolation dimensions, prospectively predict premature institutionalization of stroke survivors, increased frequency of caregiver physician visits, and the eventual onset of major depressive disorder in the caregiver at 12- and 24-month follow-ups, even after controlling for baseline demographic variables.

Reliability

The psychometric reliability of the Caregiver Burden Scale has been corroborated across numerous empirical studies, demonstrating high internal consistency and temporal stability.

Internal Consistency

In the seminal validation by Elmståhl et al. (1996), Cronbach’s alpha for the overall 22-item instrument was .89, denoting strong overall internal consistency. Across individual subscales, coefficients demonstrated robust internal coherence:

• General Strain: $\alpha = .87$
• Isolation: $\alpha = .77$
• Disappointment: $\alpha = .70$
• Emotional Involvement: $\alpha = .71$
• Environment: $\alpha = .70$

Replication studies in diverse caregiver populations (e.g., dementia, Parkinson’s disease, spinal cord injury) have yielded comparable coefficients, with total scale Cronbach’s alpha values ranging from .88 to .94. Inter-item correlations within subscales typically range between .35 and .68, satisfying the psychometric criteria that items measure a unified underlying construct without excessive informational redundancy.

Test-Retest Reliability

Test-retest stability was examined across stable caregiving arrangements over intervals spanning 2 to 4 weeks, yielding intraclass correlation coefficients (ICC) ranging from .82 to .91 for subscale scores and .93 for the total composite score. Furthermore, Cohen’s kappa coefficients for individual items demonstrated substantial concordance ($kappa = .61$ to $.84$), confirming that the CBS remains stable across short temporal windows in the absence of acute clinical crises or major environmental alterations.

Factor Analysis

The structural dimensionality of the Caregiver Burden Scale was established through rigorous exploratory and confirmatory factor analytic procedures.

Exploratory Factor Analysis (EFA)

In the original extraction by Elmståhl et al. (1996), principal component analysis followed by orthogonal (varimax) and oblique (promax) rotations was performed on the 22 items. Eigenvalue-greater-than-one criteria (Kaiser criterion) and Cattell’s scree test unequivocally supported a five-factor solution. The five extracted factors explained 64.1% of the cumulative variance:

• Factor 1 (General Strain): Explained the largest share of variance (32.4%), with substantial factor loadings ranging from .52 to .81 for items assessing practical care difficulties, excessive responsibility, somatic exhaustion, physical strain, and health decrement.
• Factor 2 (Isolation): Explained 10.8% of variance, with primary loadings (.60 to .82) on items capturing reduced social networks, curtailment of visitors, and feelings of loneliness.
• Factor 3 (Disappointment): Accounted for 8.5% of variance, with loadings (.64 to .79) for items assessing unmet life expectations, perceived unfairness of life, and thwarted biographical planning.
• Factor 4 (Emotional Involvement): Accounted for 6.8% of variance, capturing items reflecting shame, embarrassment, and resentment regarding the recipient’s behavioral changes (loadings .65 to .84).
• Factor 5 (Environment): Accounted for 5.6% of variance, loading items associated with physical obstacles in the domestic dwelling, neighborhood friction, and logistical worries (loadings .58 to .78).

Confirmatory Factor Analysis (CFA)

Subsequent psychometric investigations evaluating the CBS across international cohorts have employed structural equation modeling to test the five-factor model against alternative unidimensional and three-factor configurations. The five-factor oblique model regularly exhibits superior fit across empirical datasets:

• $\chi^2/df$ ratio: 1.85 to 2.30 (indicative of adequate model parsimony)
• Comparative Fit Index (CFI): .92 to .96
• Tucker-Lewis Index (TLI): .91 to .95
• Root Mean Square Error of Approximation (RMSEA): .048 (90% CI [.041, .056])
• Standardized Root Mean Square Residual (SRMR): .051

These findings substantiate that while the five dimensions share common variance under the overarching construct of caregiver burden, collapsing them into a single unidimensional scale obscures critical variance specific to social, environmental, and emotional domains.

Instrument / Measurement Tool

• Construct Measured: Multidimensional subjective and objective caregiver burden across emotional, social, practical, and physical environments.
• Administration Format: Self-administered paper-and-pencil or digital questionnaire; can also be administered via structured clinical interview.
• Target Population: Primary informal caregivers (spouses, adult offspring, relatives, close friends) supporting individuals with stroke, neurodegenerative diseases, or chronic disabling conditions.
• Total Number of Items: 22 items.
• Subscale Structure:
  • General Strain: 8 items (Items 1, 2, 3, 4, 5, 6, 7, 8)
  • Isolation: 3 items (Items 9, 10, 14)
  • Disappointment: 5 items (Items 11, 12, 13, 15, 16)
  • Emotional Involvement: 3 items (Items 17, 18, 19)
  • Environment: 3 items (Items 20, 21, 22)
• Response Scale: 4-point Likert-type scale:
  • 1 = Not At All
  • 2 = Seldom
  • 3 = Sometimes
  • 4 = Often
• Scoring Procedures:
  • Subscale Scores: Calculated as the arithmetic mean of the items comprising that specific domain, yielding a subscale index ranging from 1.0 to 4.0. Higher scores denote greater burden in that specific domain.
  • Total Burden Score: Calculated either as the total sum of all 22 items (ranging from 22 to 88) or as the mean score across all answered items (ranging from 1.0 to 4.0).
  • Severity Categorization (based on mean score 1.0–4.0):
    • 1.00 – 1.99: Low or minimal caregiver burden
    • 2.00 – 2.99: Moderate caregiver burden
    • 3.00 – 4.00: High to severe caregiver burden requiring clinical intervention
• Completion Time: Approximately 10 to 15 minutes.

Permissions & Fee and Test Year

The Caregiver Burden Scale was published in 1996 by Sölve Elmståhl, Bo Malmberg, and Lena Annerstedt in the peer-reviewed medical journal Archives of Physical Medicine and Rehabilitation. The scale was developed within an academic research setting funded by public medical research councils in Sweden.

In alignment with standard academic practices, the 22-item scale is widely accessible in the public academic domain for non-commercial research, academic clinical trials, and epidemiological studies. No licensing fees are assessed for non-profit academic or educational applications. When utilizing the scale, researchers and clinicians must cite the seminal 1996 publication. Commercial organizations, pharmaceutical sponsors, or proprietary software developers seeking to integrate the CBS into for-profit health technologies should contact the corresponding author or consult the publisher (Elsevier / American Congress of Rehabilitation Medicine) regarding formal copyright clearance and licensing permissions.

References

• Elmståhl, S., Malmberg, B., & Annerstedt, L. (1996). Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation, 77(2), 177–182. https://doi.org/10.1016/S0003-9993(96)90164-1
• Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.
• Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. https://doi.org/10.1093/geront/30.5.583
• Almberg, B., Grafström, M., & Winblad, B. (1997). Caring for a demented elderly person—burden and burnout among caregiving relatives. Journal of Advanced Nursing, 25(1), 109–116. https://doi.org/10.1046/j.1365-2648.1997.1997025109.x
• Graessel, E., Berth, H., Lichte, T., & Grau, H. (2014). Subjective caregiver burden: Validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s. BMC Geriatrics, 14, Article 23. https://doi.org/10.1186/1471-2318-14-23
• Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649–655. https://doi.org/10.1093/geront/20.6.649

13. Items of the Scale (Questionnaire)