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When someone becomes ill, the health system measures the patient. The Caregiver Self-Assessment Questionnaire 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
- Developed and tested by the American Medical Association, and handed out by carer organisations ever since.
- Eighteen items. Sixteen answered yes or no, then two rated from 1 to 10.
- It measures carer distress, not how many hours of care someone provides.
- Two single items flag distress on their own, whatever the total comes to.
- Tested as a depression screen in the Journal of the American Geriatrics Society in 2010.
What it measures#
The questionnaire asks the carer about themselves. Not about the person they care for, and not about the volume of care being provided: about sleep, crying, irritability, back pain, loneliness, lost privacy, feeling overwhelmed, and being strained between work and family.
That framing is the design. Two carers can provide identical hours of identical care and be in completely different states, 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 distress does.
Two items are written positively and scored in reverse: feeling useful and needed, and being satisfied with the support your family has given you. Their absence counts toward the total, which is a quiet acknowledgement that recognition is part of the load rather than a nicety layered on top of it.
Hours measure what care takes from your day. This measures what it takes from you.
How it is scored#
Sixteen items are answered yes or no. Questions 5 and 15, the two positively worded ones, are reverse scored, so a no counts as a yes. The yes answers are then totalled.
The final two items are rated from 1 to 10. Question 17 asks the carer to rate their current level of stress. Question 18 asks them to rate their current health against their health a year ago, with a higher number meaning worse.
| Signal | What triggers it |
|---|---|
| Question 4 or question 11 | A single yes to feeling completely overwhelmed, or to crying spells |
| Total yes answers | 10 or more, after reverse scoring questions 5 and 15 |
| Question 17 | Current stress rated 6 or higher |
| Question 18 | Health rated 6 or higher, meaning worse than a year ago |
What the validation shows#
Epstein-Lubow and colleagues tested the questionnaire against established measures of depression, burden, stress and grief in 106 family carers, and published the result in the Journal of the American Geriatrics Society in 2010.
Scored by its own instructions, it detected significant depressive symptoms with a sensitivity of 0.98 and a specificity of 0.52. Internal consistency was reported at 0.82.
Those two numbers describe the instrument precisely, and they have to be read together. A sensitivity of 0.98 means it almost never misses a carer with significant depressive symptoms. A specificity of 0.52 means roughly half the carers it flags do not have them. It is a wide net, and that is what it was built to be.
Limits worth knowing#
- It is a prompt, not an assessment. It tells a carer that something is worth looking at. It does not say what would help, and respite, money, therapy and practical support are not interchangeable.
- Around half of its positive results are false ones. That is the price of missing almost nobody, and it is the right trade for a screening prompt. It is the wrong trade for anything presented as a verdict.
- Under-reporting is systematic. Carers routinely minimise, partly because admitting to strain feels like disloyalty, and partly because they have stopped noticing.
- Yes or no loses detail. Sixteen binary items cannot record that something is occasionally true, and most of them carry no stated recall window.
- Cultural expectation shifts the baseline. Where family caregiving is a strong social norm, the same load may be reported as less distress, which changes what a result means rather than what the carer is carrying.
Why you have probably never been asked these questions#
The questionnaire is short, well established, and reproduced widely by carer organisations, hospices and health services. Most carers will still go their entire caregiving life without anyone handing it to them.
Much of that is structural. Health systems are organised around patients, and the carer accompanying the patient is not one. There is usually nobody whose job it is to ask, no field to record the answer in, and no budget attached to the result.
So 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 Caregiver Self-Assessment Questionnaire?
- The Caregiver Self-Assessment Questionnaire is an 18-item self-report tool measuring distress in people caring for a relative or friend. Sixteen items are answered yes or no, and two are rated from 1 to 10. It was developed and tested by the American Medical Association.
- How is the Caregiver Self-Assessment Questionnaire scored?
- Questions 5 and 15 are reverse scored, then the yes answers are totalled. A high degree of distress is indicated by any one of the following on its own: a yes to question 4 or question 11, a total of 10 or more yes answers, a rating of 6 or higher on question 17, or a rating of 6 or higher on question 18.
- What does the Caregiver Self-Assessment Questionnaire ask about?
- It asks the carer about their own state rather than about the person they care for: sleep, crying, irritability, back pain, loneliness, lost privacy, feeling overwhelmed, and strain between work and family. Two items are worded positively, covering feeling useful and needed and satisfaction with family support, and these are reverse scored.
- How does it differ from the Zarit Burden Interview?
- The Zarit Burden Interview is a 22-item measure of subjective caregiver burden and remains the reference instrument in caregiving research. The Caregiver Self-Assessment Questionnaire is shorter and designed as a prompt to seek help rather than as a research measure, which is why it is the one a carer is more likely to be handed.
immli is a wellbeing and understanding tool, not a medical service. Questions about this page go to hello@immli.me.
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