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When someone becomes ill, health systems measure the patient. The Zarit Burden Interview measures the other person in the room — the one doing the caring, whose own health is not being recorded anywhere and who is statistically likely to be deteriorating.
In short
- Introduced by Steven Zarit and colleagues in 1980, in a study of carers of people with dementia.
- The standard form has 22 items, each scored 0–4, giving a total from 0 to 88.
- It measures burden across personal strain and role strain — the toll on the self, and the toll on the life around the self.
- Short forms exist down to a single item, for settings where 22 questions cannot be asked.
- It is a copyrighted instrument. Use in any product or service requires a licence from the rights holder.
What the ZBI measures#
The ZBI measures subjective burden — how caring feels to the person doing it, rather than how much caring they objectively do. This distinction is the instrument's central insight and the reason hour-counting was never sufficient.
Two carers can provide identical hours of identical care and experience it completely differently, depending on the relationship, the support around them, what they had to give up, and whether anyone has acknowledged it. Objective load explains far less of the variance in carer outcomes than subjective burden does.
The items span the recognised territory: strain on health and finances, loss of personal time and social life, effect on other relationships, uncertainty about the future, feeling that more should be done, and the specific and rarely-discussed weight of resentment toward someone you love.
Hours measure what care takes from your day. Burden measures what it takes from you.
How it is scored#
Each item is rated for frequency, from never (0) to nearly always (4). The 22 items are summed for a total from 0 to 88.
| Total score | Commonly reported band |
|---|---|
| 0–20 | Little or no burden |
| 21–40 | Mild to moderate burden |
| 41–60 | Moderate to severe burden |
| 61–88 | Severe burden |
Short forms#
The 22-item form is short by research standards and long by clinical ones. A carer accompanying someone to an appointment is not usually in a position to sit down with a questionnaire, so validated short forms were developed — commonly 12-item, 7-item, 4-item and even single-item screening versions.
The compression works better than one might expect: short forms correlate strongly with the full instrument for screening purposes. What they lose is the profile — which kind of burden is high — and that profile is usually what determines what would actually help.
Licensing#
This is worth stating plainly because it shapes the whole field. Freely available instruments spread and become defaults; licensed ones stay inside funded research. That the best-validated measure of caregiver burden sits behind a licence is part of why caregiving remains so poorly measured outside academic work — and it is why we describe the instrument here rather than reproducing it.
Limits worth knowing#
- It was developed in dementia care. It is used far more widely now, but its origin shapes which items feel relevant, and it fits some caregiving contexts better than others.
- Under-reporting is systematic. Carers routinely minimise, both because acknowledging burden feels like disloyalty and because they have stopped noticing.
- It measures burden, not need. A high score does not tell you which intervention would help — respite, financial support, therapy and practical help are not interchangeable.
- Cultural expectation shifts the baseline. Where family caregiving is a strong social norm, the same objective load may be reported as lower burden, which changes what a score means rather than what the carer is carrying.
Why you have probably never been asked these questions#
The ZBI has existed since 1980, is translated into dozens of languages, and is the reference measure in its field. Most carers will nonetheless go their entire caregiving life without anyone administering it, or anything like it, to them.
Part of that is licensing, as above: instruments that are free spread into routine practice, and instruments that are not tend to stay inside funded research. Part of it is structural — health systems are organised around patients, and the carer accompanying the patient is not one.
The result is that one of the more predictable drains on a person's health goes almost entirely unrecorded, in a system that measures a great many less consequential things. For a practical treatment of the subject, see our guide to caregiver burden.
Common questions#
- What is the Zarit Burden Interview?
- The Zarit Burden Interview is a questionnaire measuring subjective caregiver burden — how caring for another person feels to the carer. The standard form has 22 items scored 0 to 4, giving a total from 0 to 88. It was introduced by Steven Zarit and colleagues in 1980 and is the most widely used measure of caregiver burden.
- How is the Zarit Burden Interview scored?
- Each of the 22 items is rated from never (0) to nearly always (4), and the items are summed for a total from 0 to 88. Commonly cited bands are 0 to 20 for little or no burden, 21 to 40 mild to moderate, 41 to 60 moderate to severe, and 61 to 88 severe, though thresholds vary between studies and populations.
- Is the Zarit Burden Interview free to use?
- No. The ZBI is a copyrighted instrument distributed under licence. Reproducing, translating or embedding it in a product requires permission from the rights holder.
- What is the difference between caregiver burden and caregiver stress?
- Burden refers to the perceived overall toll of the caregiving role across health, finances, time, relationships and sense of self. Stress usually refers to the acute physiological and emotional response to specific demands. Burden is the sustained condition; stress is the episode. The ZBI measures burden.
immli is a wellbeing and understanding tool, not a medical service. Questions about this page go to hello@immli.me.
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