Family caregivers play an increasingly important role in health 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 was developed to measure the subjective impact of caring for a family member with dementia or other chronic health or mental health problem on the caregiver’s life. The instrument can be used for different purposes: screening caregivers to identify those people at higher risk, comparing burden in different groups or populations, and for planning or evaluating the outcomes of treatment. Although the ZBI was developed specifically for caregivers of persons with dementia, 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 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. This approach provides a composite summary of caregivers’ appraisal of the impact that caregiving 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. Some articles have proposed short versions of the ZBI. These articles use items from the ZBI and use the same instructions. The number of items in short forms ranges from 4 to 18 (Yu et al., 2018).

There are good reasons to use short versions of the ZBI but also disadvantages.

1. One reason to shorten the ZBI is if some items may not be appropriate for the intended sample. For example, there are many studies in the research literature that use the ZBI in studies with parents caring for children or adolescents with mental or physical disabilities. Since the ZBI was originally developed based on an adult population, Dr. Zarit advises researchers to review the items in the scale in order to determine if any of these items are not appropriate for their sample.
2. The same reasoning goes to studies with samples that have chronic physical health problems. The researcher should take the time to evaluate if any ZBI items are not appropriate for the sample. Those items then can be eliminated.
3. If a study is conducting a population survey that focuses on caregiving, it would be advantageous to use the full scale. A full scale will cover the range of possible experiences related to burden and the intensity with which some items are reported. A short version may miss key dimensions of burden.
4. When a short version is needed because of the time and resources available to the research, versions with 12 items or more would be optimal. Shorter forms may yield a truncated view of burden.
5. If the time and resources require further cuts, a brief version of the ZBI can be used. Dr. Zarit does not recommend any short versions of less than 7 items. The 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).
6. 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

12-item version
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

Additional reference:
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

Variation of the ZBI – Caregivers of persons with schizophrenia:

Early studies of burden were conducted with samples of caregivers of persons with mental illness. There is currently much less focus on mental illness, and more research is warranted.

• Gater, A., Rofail, D., Tolley, C., Marshall, C., Abetz-Webb, L., Zarit, S. H., & Berardo, C. G. (2014). “Sometimes it’s difficult to have a normal life”: Results from a qualitative study exploring caregiver burden in schizophrenia. Schizophrenia Research and Treatment. doi: 10.1155/2014/368215.

Translations are available in numerous languages, most of which are suitable for clinical studies.

The ZBI was developed based on clinical experience, early studies of family caregivers, theoretical models of the stress process, and caregivers’ own perspective of the effect that caregiving had on their daily lives.

In the late 1970s, Dr. Zarit ran a clinic, the Andrus Older Adult Center, that provided services for older people experiencing mental health problems and their families, and conducted research. 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. This measure could help gather more systematic information about how caregiving affected caregivers, and it could be used as an outcome measure in programs like support groups and other interventions.

Many measures are developed in research settings using academic language. In the creation of items for the ZBI, the use of language caregivers used when discussing their experiences was implemented. There is validity in the measure that captures the uses most important to caregivers.

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 for older people with dementia or other chronic disabilities to live at home for 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 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. The ZBI looks at the psychological, social, health, and financial impact experienced by caregivers. 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 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, which are important dimensions of caregivers’ experiences. Other checklists, such as the Memory and Behavior Problems Checklist (MBPC), identify the types of stressors occurring in a care situation, such as memory or behavior problems. But caregivers vary considerably in how they responded to stressors. 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 within 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 the daily tasks and challenges caregivers face have the potential for generating feelings of burden.

The ZBI can be considered as a cumulative risk measure. Higher scores indicate that caregiving has a 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 assessing risk, tracking changes over time, and measuring treatment outcomes.

In research:

The ZBI has been widely used in various research settings. Much of this research has been conducted with caregivers of persons with dementia, but the ZBI has also been used with caregivers of persons with other illnesses and disabilities than dementia. A few examples are described below.

The ZBI has often been used as an outcome of descriptive population studies. Caregivers vary in their situations and what they believe is challenging. For that reason, the ZBI is designed to capture a broad range of caregiving issues. Population studies can be with caregivers of older people or with caregivers of adults with chronic, debilitating disorders. Numerous studies have also been conducted with parents of children or adolescents with serious disabilities.

The ZBI has also been frequently used as an outcome in interventions. Goals of behavioral intervention often are to improve caregivers’ understanding and management of behavior problems. Improved management of behavior would be reflected in the ZBI. So would an intervention that helps caregivers improve support from family members or reach out for paid services.

Group interventions are often overlooked in recent years, but skilled group leaders can build a special kind of support that comes only from people who are experiencing the same problems. The effect of increasing support should be reflected in the ZBI.

The ZBI can be useful in medication trials. Much of the focus on outcomes has been on cognitive scores, which have shown limited improvement. A focus on burden might identify subtle daily changes in behavior and relationships and reduce the strain of daily care.

There is an important consideration in the use of the ZBI as well as other outcome measures in interventions. In most caregiving interventions, researchers have not considered baseline scores of participants. If participants report minimal levels of burden at baseline, they cannot show improvement from the intervention. This baseline problem has been the case whether the outcome measure is burden, depression, or any other measure. As a result, positive effects in interventions can be suppressed because a portion of the sample cannot demonstrate improvement. Karen Lyons and her colleagues have a recent paper that goes into this issue in depth:

• Lyons, K. S., Russell, L. T., Johnson, K. B., Brewster, G. S., Carter, J. H., & Lyndsey M. Miller (2024).
• Evaluating the dyadic benefits of early-phase behavioral interventions: An exemplar using data from couples living with Parkinson’s disease.
• The Gerontologist, 64, 1-9. https/doi.org/1093/geront/gnad172.

Clinical applications:

With the growing numbers of older people, psychologists, social workers, geriatricians, nurses, and other clinicians are more likely to encounter caregivers and care recipients in their practice. The ZBI provides a quick assessment of the problems that a caregiver is experiencing. The ZBI can inform the clinician what are the main issues that a caregiver is experiencing and how severe those problems are.

The ZBI can be administered by a trained interviewer, 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 together 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). Therefore, cut-offs should be estimated based on findings from the specific population under consideration.

A conceptual analysis of the ZBI has identified several dimensions:

• Burden in the relationship (6 items)
• Caregiver’s emotional well-being (7 items)
• Social and family life (4 items)
• Finances (1 item)
• Loss of control over one’s life (4 items)

Please visit ePROVIDE™ for additional information on the ZBI.

The ZBI is distributed by Mapi Research Trust on behalf of its copyright holder, Dr. Steven Zarit.

Mapi Research Trust is a non-profit organization dedicated to improving patients’ quality of life by facilitating access to Patient-Centered Outcome (PCO) information by centralizing information. Please visit our website for more information: mapi-trust.org

Any questions on the ZBI, on its conditions of use or available translations shall be directed to Mapi Research Trust.

Please submit your request directly through our ePROVIDE™ database, and our licensing team will get back to you as soon as possible.

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

Webinar:

Please freely listen to an Author Webinar on the ZBI. Recorded session available here (duration: about one hour).

My career began in the 1970s, which was a propitious time for studying caregiving. Families have always cared for their older and disabled relatives, but there had been little attention in the research literature about family caregivers or about the challenges they face in their everyday lives. Likewise, clinicians had little experience or training working with caregivers of older people.

My graduate and postdoctoral studies at the University of Chicago focused on aging, which was unique at that time. I worked with Dr. Robert L. Kahn, one of the pioneers in Clinical Psychology of Aging. From Dr. Kahn I learned how to do assessments for dementia and other problems of older persons. Dr. Kahn was a strong proponent of community mental health, which emphasized helping people live at home rather than in institutions. But he also recognized that families caring for someone with dementia at home often reported being overwhelmed by caregiving demands and needed time off from providing care. If we were to help the person with dementia, we had to support the family, so that they could continue providing care without becoming overwhelmed.

In 1975, I joined the faculty as an Assistant Professor at the Andrus Gerontology Center at the University of Southern California. Soon after, I was asked to organize an off-campus program, called the Andrus Older Adult Center, that would assist older people living in the community and also conduct research. The USC program opened with little fanfare or resources. We had money for a coordinator who answered calls, set up appointments, and that was all. My staff consisted of graduate students in master and doctoral programs at USC and a faculty colleague who worked with us to learn more about clinical issues of older persons.

The Older Adult Center offered a range of services, from Information and Referral to Individual and Family Counseling. Without much publicity, we soon had a regular stream of people seeking help, sometimes for themselves, but often for the persons they were caring for. Many of the families were caring for a parent or spouse suffering from dementia (or chronic organic brain disorder, as it was then called). Caregivers told us how caregiving dominated their lives, leaving them little time and energy to do anything else than caregiving. They had no time away from the care recipient and often were not able to engage in activities that they previously had enjoyed. Furthermore, the daily care they gave often left them physically and emotionally exhausted. Many caregivers complained about being awakened during the night and not being able to get enough sleep.

We helped caregivers understand their relative’s illness and behaviors. We also helped them use behavioral strategies to manage the symptoms of the disease and to find programs or services that could relieve some of the pressures of caregiving they were experiencing. Most of all, we listened to them and learned about the challenges they faced. We listened to them in one-to-one meetings, and we started a support group for family caregivers. Talking with other people in the group who were experiencing similar problems helped them speak more openly about their problems. They also were able to give support and practical suggestions to each other.

These conversations with caregivers led to a prototype of the Burden Scale that we began administering to caregivers in our clinic. We asked the items in the scale orally, so that we could find out caregivers’ reactions to the items. By having a relationship with caregivers, we were able to identify which items were useful and which were not. We knew we were on target when a caregiver would tell us the items we asked were describing what they were going through. We also used their words in describing their experiences. In creating items for the ZBI, we drew upon the language caregivers used when discussing their experiences. I believe what makes the ZBI useful is that it reflects the voices of caregivers. There is a validity in the measure that captures the issues most important to caregivers.

Finally, the title, Zarit Burden Interview, was not a burst of narcissism. The original name was Burden Interview. As the Burden Interview became widely used, people began to call it the Zarit Burden Interview. I have conceded and now use that name.

Many people have contributed to the development of the ZBI over the years. Julie Bach and Karen Reever worked with Dr. Zarit in developing the original versions of the Burden Interview and were co-authors on the original manuscript. His wife, Judy Zarit, was instrumental in revising and testing the early versions and writing about clinical work with family caregivers.

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