Family caregivers play an increasingly important role in health care and long-term care. People experiencing acute health care problems such as a recent surgery or who require a complex regimen of treatment often depend on a family member for assistance. Likewise, older people with chronic disabilities typically depend on family so that they can remain at home and carry out daily activities of living (ADL). In these kinds of situations, family caregivers may find that the time, effort, and energy involved in providing help exceeds what they are willing or able to provide. They may also find that caregiving interferes with other valued activities in their lives including employment, relationships with family and friends, and leisure time. A fundamental element of the care process is caregivers’ subjective reactions or burden. These subjective reactions indicate how well caregivers are able to manage the varied demands they face and the impact those demands are having on their lives. Furthermore, caregivers will base care decisions such as whether to seek help or to end their caregiving role based on these subjective feelings of burden.
The ZBI can be used for different purposes: screening caregivers to identifying those people at higher risk; comparing burden in different groups or populations; and for planning or evaluating the outcomes of treatment. The ZBI was developed specifically for caregivers of persons with dementia, but it has been widely used with a large variety of other disorders including stroke, cancer, chronic mental illness, and for parents of children with severe physical or mental health problems.
The ZBI can be completed by caregivers themselves or administered as an interview. Caregivers are asked to respond to a series of 22 questions about the impact of the patient’s disabilities on their life. For each item, caregivers are to indicate how often they have felt that way: never, rarely, sometimes, quite frequently, or nearly always. Items have proven to be relevant and acceptable to caregivers from many different countries and cultures.
The ZBI has been developed as a composite measure. As such, it combines different aspects or dimensions of caregivers’ reactions to their involvement. It provides a composite summary of caregivers’ appraisal of the impact their involvement has had on their lives.
In recent years, several short forms of the ZBI have been published in the literature. A short form reduces the time needed for administration. This literature suggests that very short forms (4 to 7 items) often do not correlate well with full or longer versions (e.g., Lin et al., 2019). We can recommend three versions (12 items, 12 items, 14 items) which correspond well to the full scale and have good psychometric properties. A 4 item screening version is not recommended.
Recommended Short Forms:
12-item version using item response theory and confirmatory factor analysis. Ballesteros, J., et al., (2012). Unidimensional 12-item Zarit Caregiver Burden Interview for the Assessment of Dementia Caregivers’ Burden Obtained by Item Response Theory. Value in Health, 15, 1141-1147. http://dx.doi.org/10.1016/j.jval.2012.07.005
Bédard, M., et al. (2001). The Zarit Burden Interview: A New Short Version and Screening Version, Gerontologist, 41, 652-657.
14 item version.
Longmire, C. V. F., & Knight, B. G. (2011). Confirmatory factor analysis of the Zarit Burden Interview in Black and White caregivers. Gerontologist, 51, 453-62. doi:10.1093/geront/gnr011
Lin, C-Y., et al. (2019). Measuring burden in dementia caregivers: Confirmatory factor analysis for short forms of the Zarit Burden Interview, Archives of Gerontology and Geriatrics, 68, 8-13. http://dx.doi.org/10.1016/j.archger.2016.08.005
Translations are available in over 100 languages, including 71 validated translations.
The ZBI was developed based on clinical experience, early studies of family caregivers, and from theoretical models of the stress process. In the late 1970s, Dr. Zarit ran a clinic that provided services for older people experiencing mental health problems and their families. Many families sought help at the clinic for the problems they experienced in caring for a parent or spouse suffering from dementia (or chronic organic brain disorder, as it was then called). The initial Burden Interview was developed based on the experiences described by these families.
Contributing to the development of the ZBI was early work on the impact of psychiatric illness on families. Research by Pasamanick, Scarpitti, and Dinitz (1967), Lowenthal and Berkman (1968) and Grad and Sainsbury (1963, 1968) described the importance of the subjective experience of burden in influencing the course of care and as a valuable outcome measure for assessing treatment. Likewise, Kahn (1975) proposed that treatment to lower the burden on family caregivers could make it possible to maintain older people with dementia or other chronic disabilities at home longer and improve their quality of life.
The theoretical framework for the ZBI owes much to stress theory, particularly the differentiation of objective and subjective indicators of stressors and the concept that the effects of highly stressful situations such as caregiving can proliferate into other areas of a person’s life (e.g., Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Lazarus & Folkman, 1984; Pearlin, Mullan, Semple & Skaff, 1990).
The focus of the ZBI from the outset was on the subjective impact that providing assistance to a family member with dementia or other chronic health or mental health problem has on the caregiver’s life. Caregiving leads to changes in the relationship of caregiver and care receiver, which may upend the pattern of exchanges of support and affection. Caregiving may also come to dominate a caregiver’s time, and diminish opportunities for engaging in valued activities with family, friends or at work that provide enjoyment and meaning. These are the areas assessed by the ZBI.
Caregivers’ subjective experiences of care are related to but also independent of the type and frequency of care tasks or patients’ symptoms. Although it is important to identify the types of stressors occurring in a care situation, caregivers will vary considerably in how much subjective impact stressors have on their lives. Some caregivers may report high subjective burden even though providing only small amount of care, whereas other caregivers may be giving extensive amounts of care yet report little burden. Subjective burden arises due to care-related stressors, but the extent of burden depends on the psychological, social, and financial resources available to a caregiver and the caregiver’s relationship to the care receiver. Furthermore, the decisions caregivers make, such as pivotal issues of seeking help or placing the care recipient in an institutional setting, are likely to be influenced most directly by feelings of the impact that providing care has had on their life. Additionally, subjective burden is a critical dimension for assessing outcomes of interventions. An intervention may successfully lower levels of care-related stressors, yet caregivers may not experience relief from their perceived burden (e.g., Zarit, Zarit, & Reever, 1982).
The ZBI differs from symptom or problem checklists. Checklists typically assess the occurrence of problems and the degree of upset or distress caregivers experience when a problem occurs. Those are important dimension of caregivers’ experiences. The ZBI focuses on different aspects of caregiving, specifically, the impact of providing care on caregivers’ lives, including their relationship with the care receiver, emotional well-being, social and family life, finances and feelings of control of their life. The ZBI also differs from measures of depression or other emotional distress. Depression is one possible outcome of caregiving, but many caregivers report little or no depressive symptoms. By contrast, burden is integrally embedded in the caregiving experience, and so burden provides a more direct and specific assessment of the subjective impact of providing care than depression. That’s not to suggest that all caregivers experience burden, but rather there is the potential for all caregiving circumstances to generate feelings of burden.
The ZBI can be considered as a cumulative risk measure. Higher scores indicate that caregiving has greater impact on the caregiver’s life. As such, the ZBI combines different aspects or dimensions of caregivers’ reactions to their involvement. The ZBI can be used in research or clinical settings when a single summary measure of appraisals of the impact of caregiving is needed. Applications of the ZBI include as an assessment of risk, for tracking changes over time, and as a measure of treatment outcomes.
The ZBI can be administered by a trained interviewer or used as a paper and pencil test or with an e-version. The instructions are:
“The following is a list of statements, which reflect how people sometimes feel when taking care of another person. After each statement, indicate how often you feel that way; never, rarely, sometimes, quite frequently, or nearly always. There are no right or wrong answers.”
The wording of items refers to the caregiver’s “relative.” Relative is meant to be a placeholder for the specific relationship between caregiver and care recipient. For example, an interviewer would substitute “parent” or “husband” for relative, or whatever relationship was involved. In printed interviews, researchers can substitute an alternative term for relative to fit their research purposes.
All items are scores on a 5-point scale ranging from 0 to 4. The first 21 items are scored: 0-never, 1-rarely, 2-sometimes, 3-quite frequently, and 4-nearly always. The final item, “Overall, how burdened do you feel in caring for your relative?” is scored on a comparable 5-point scale: 0-not at all, 1- a little, 2-moderately, 3-quite a bit, and 4-extremely. A total score is computed by summing the 22 items.
When a few items are missing a total score can be computed by adding the mean score per item based on the items that have been answered to replace the missing items. This should not be done when the number of missing items is greater than 6.
Higher scores indicate greater burden. Cut-off scores have been suggested in the literature (e.g., Arai & Zarit, 2014; Rankin et al., 1994). However, levels of burden reported vary across populations, both across countries and between different populations within a country (e.g., Prince, Broday, Uwakwe, Acosta, Ferri et al., 2009; Schneider, Murray, Benerjee, & Mann, 1999). This finding suggests that cut-offs should be estimated based on findings from the specific population under consideration.
A conceptual analysis of the ZBI has identified several dimensions:
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The ZBI is distributed by Mapi Research Trust on behalf of its copyright holder, Dr. Zarit.
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Any questions on the ZBI, on its conditions of use, its available translations shall be directed to Mapi Research Trust.
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The list of existing and available translations of the ZBI is available on ePROVIDE™
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“I have been thoroughly pleased with the professionalism with which the Mapi group has handled every aspect of managing the measure that I developed. I have been particularly impressed with the Linguistic Validation process used in translations. As the author of the measure, I have had the opportunity to be involved in the process and to be able to see the attention to nuances in meaning in the translations, as well as to have the opportunity to weigh in on which wording seemed most appropriate. I have also appreciated the way that MAPI staff brings questions to my attention that potential users of the measure have raised. There is a commitment by Mapi staff in conducting all their activities the right way. Finally, my measure has had far wider distribution that would not have been possible had I managed it myself.”
– Dr. Zarit
Anthony-Bergstone, C., Zarit, S.H., & Gatz, M. (1988). Symptoms of psychological distress among caregivers of dementia patients. Psychology And Aging, 3, 245-248.
Hébert, R., Bravo, G., & Préville, M. (2000). Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging, 19, 494-507.
Whitlatch, C.J., Zarit, S.H., & von Eye, A. (1991). Efficacy of interventions with caregivers: A reanalysis. The Gerontologist, 31, 9-18.
Zarit, S. H. (2008). Diagnosis and management of caregiver burden in dementia. In C. Duyckaerts & I. Litvan (Eds.), Handbook of Clinical Neurology, V89 (3rd series) Dementias. (pp. 905-910). Elsevier.
Zarit, S. H. (2002). Caregiver’s burden. In S. Andrieu & J.-P. Aquino (Eds.), Family and professional carers: Findings lead to action (pp. 20-24). Paris: Serdi.
Zarit, S.H., Anthony, C.R., & Boutselis, M. (1987). Interventions with caregivers of dementia patients: Comparison of two approaches. Psychology And Aging, 2, 225-232.
Zarit, S.H., Orr, N.K., & Zarit, J.M. (1985). The Hidden Victims Of Alzheimer’s Disease: Families Under Stress. New York: New York University Press.
Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649-655.
Zarit, S.H., Todd, P.A., & Zarit, J.M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist, 26, 260-266.
Selected Examples from over 350 publications.
Arai, Y., & Zarit, S. H. (2014). Determining a cutoff score of caregiver burden for predicting depression among family caregivers in a large population-based sample. International Journal of Geriatric Psychiatry, 29, 1312-1317. DOI: 10.1002/gps.4174
Belle, S. H., Burgio, L., Burns, R., Coon, D., Czaja, S. J., Gallagher-Thompson, D., Zhang, S. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups. Annals of Internal Medicine, 145, 727-738.
Galvin, J. E., Duda, J. E., Kaufer, D. I., Lippa, C. F., Taylor, A., & Zarit, S. H. (2010). Lewy body dementia: Caregiver burden and unmet needs. Alzheimer’s disease and related disorders, 24, 177-18.
Gaugler, J. E., Mittelman, M. S., Hepburn, K., & Newcomer, R. (2010). Clinically significant changes in burden and depression among dementia caregivers following nursing home admission. BMC Medicine, 8, 1-14.
Hepburn, K. W., Tornatore, J., Center, B., & Ostwald, S. W. (2001). Dementia family caregiver training: Affecting beliefs about caregiving and caregiver outcomes. Journal of the American Geriatrics Society, 49(4), 450-457. nhttp://dx.doi.org/10.1046/j.1532-5415.2001.49090.x
Knight, B. G., Fox, L. A., & Chou, C-P. (2000). Factor structure of the Burden Interview. Journal of Clinical Geropsychology, 6, 249-258.
Longmire, C. V. F., & Knight, B. G. (2011). Confirmatory factor analysis of a brief version of the Zarit Burden Interview in black and white dementia caregivers. Gerontologist, 51, 453-462.
Martire, L. M., Schulz, R., Reynolds, C. F. 3rd, Karp, J. F., Gildengers, A. G., & Whyte, E. M. (2010). Treatment of late-life depression alleviates caregiver burden. Journal of the American Geriatrics Society, 58, 23-29. doi: 10.1016/j.psychres.2008.04.010.
Mausbach, B. T., Harmell, A. L., Moore, R. C., & Chaillion, E. A. (2011). Influence of caregiver burden on the association between daily fluctuations in pleasant activities and mood: A daily diary analysis. Behavior Research and Therapy, 49,74-79. doi: 10.1016/j.brat.2010.11.004
Prince, M., Brodaty, H., Uwakwe, R., Acosta, D., Ferri, C. P., et al. (2009). Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey. International Journal of Geriatric Psychiatry, 27, 670-682.
Rankin, E. D., Haut, M. W., Keefover, R. W., & Franzen, M. D. (1994). The establishment of clinical cutoffs in measuring caregiver burden in dementia. Gerontologist, 34, 428-432.
Schneider, J., Murray, J., Banerjee, S., & Mann, A. (1999). Eurocare: A cross-national study of co-resident spouse carers for people with Alzheimer’s disease: I—Factors associated with carer burden. International Journal of Geriatric Psychiatry, 14, 651-661.
Aneshensel, C., Pearlin, L. I., Mullan, J. T., Zarit, S. H., & Whitlatch, C. J. (1995). Profiles in caregiving: The unexpected career. New York: Academic Press Grad, J., & Sainsbury, P., (1963). Mental illness and the family. Lancet, i, 544-547.
Grad, J., & Sainsbury, P. (1968). The effects that patients have on their families in a community care and a control psychiatric service: A two year follow-up. British Journal of Psychiatry, 114, 265-278.
Kahn, R. L. (1975). The mental health system and the future aged. Gerontologist, 15 1, Part 2), 24-31.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.
Lowenthal, M. F., Berkman, P., & associates. (1967). Aging and mental disorder in San Francisco. San Francisco, CA.,: Jossey-Bass.
Pasamanick, B., Scarpitti, R. P., & Dinitz, S. (1967). Schizophrenics in the community: An experimental study in the prevention of hospitalization. New York: Appleton-Century Crofts.
Pearlin, L. I., Liberman, M. A., Menaghan, E. G., & Mullan, J. T. (1981). The stress process. Journal of Health and Social Behavior, 22, 337-356.
Zarit, S. H., & Heid, A. M. (2015). Assessment and Treatment of Family Caregivers. In P. A. Lichtenberg & B. T. Mast (Eds.-in-Chief), B. D. Carpenter & J. L. Wetherell (Assoc. Eds.), APA handbooks in psychology: APA handbook of clinical geropsychology: Vol. 2. Assessment, Treatment, and Issues of Later Life (pp. 621-552). Washington, DC: American Psychological Association.
Zarit, S. H., & Zarit, J. M. (2015). Family caregiving. In B. Bensadon (Ed.). Psychology and Geriatrics. Waltham, MA: Academic Press.
Steven H. Zarit is Distinguished Professor Emeritus in the Department of Human Development and Family Studies at the Pennsylvania State University with an adjunct appointment at the Institute of Gerontology at Jönköping University in Sweden.
Dr. Zarit received his PhD from the Committee on Human Development at the University of Chicago, with emphases in adult development and aging and clinical psychology.
Dr. Zarit is a pioneer in the study of family caregivers. Beginning in the later 1970s, he has built an extensive research program on family caregiving, including one of the first trials of a psychosocial intervention for caregivers of persons with dementia. His work has defined and continues to influence the field. He was a member of the research team headed by Dr. Leonard Pearlin that conducted the largest and most in-depth longitudinal study of caregivers to date. In recent years he has explored divergent approaches to reduce stress and burden on caregivers. In a recent study, he and his team found that caregivers of persons with dementia who used adult day care showed improvement in three critical biological markers of the body’s stress response, as well as in their health and well being. He has also conducted research that has explored functioning and well being among the oldest old, people 80 and over, and identified factors associated with continued independence in very late life.
Dr. Zarit and his colleagues developed two of the most widely used measures in caregiver research, the Zarit Burden Interview (ZBI), and Memory and Behavior Problems Checklist.
Dr. Zarit has held extensive service positions. He is past editor of the journal, Aging & Mental Health and member of the Board of Directors of the National Adult Day Services Association. Among past positions, he served on study sections for the National Institute on Aging and chaired the Aging Subcommittee of the National Institute of Mental Health. He was chair of the Behavioral and Social Sciences Division of the Gerontological Society of America, President of
the Adult Development and Aging Division and the Clinical Geropsychology section of the American Psychological Association, a member and first chair of the Committee on Aging of the American Psychological Association, and a member of the board of directors, Alzheimer’s Association. He was head of the Department of Human Development and Family Studies at the Pennsylvania State University from 2003-2014, and previously was Associate Director of the Gerontology Center.
Dr. Zarit has published over 300 articles and chapters as well as several books.
Please read Dr. Zarit’s blog: The Gift of Aging: The Baby Boomer’s Guide to Midlife and Beyond
Please view Dr. Zarit’s CV.