(Part 7 in a series that looks at how much we over- and under-research caregiving, leaving family caregivers without effective support and impactful programs.)
Something significant is happening right now.
Money is moving toward family caregivers in ways we have not seen before. In November 2025, Texas voters approved $3 billion over ten years to establish the Dementia Prevention and Research Institute of Texas, the largest state-funded dementia research initiative in the nation, touching the lives of nearly one million family caregivers. In January 2026, Illinois released EngAging Illinois: A Comprehensive Plan for Living Well, a decade-long blueprint through 2036 with an explicit focus area titled “Investing in Caregivers.” Two states. Two significant commitments. A signal that the country is beginning to reckon with what family caregivers and older adults actually need.
In May 2026, the National Alliance for Caregiving filed a public comment with CMS on the proposed 2028 Home and Community-Based Services Quality Measure Set — co-signed by 22 organizations — pointing out that family caregivers are almost entirely absent from the federal measurement framework. Their recommended solution: “validated caregiver burden and support measures.”
The money is moving. The measurement field is already deciding how it will be spent.
That matters because Texas and Illinois will look to research to guide their investments in family caregivers and older adults. Researchers will be hired. Assessments will be designed. Instruments will be chosen. And if the field follows the path it has always followed, the instrument already waiting on the shelf is the same one it has used for 46 years.
Family caregivers deserve to know what that instrument is and what it does to the person who fills it out.
Part 6 named the attack on family caregivers. It showed how a federal official’s dismissal became a state legislature’s permission and how the language the field chose made that dismissal possible. Calling family caregivers informal. Unpaid. Invisible. A definition narrow enough that politicians could look through it and see nothing worth defending.
But the language didn’t come from nowhere. It came from the instrument.
For 46 years, the field measured family caregivers with a tool that asks them to rate their worst feelings about the people they care for. That instrument shaped the research. The research shaped the policy. The policy shaped the attack. The attack cuts the income of family caregivers who never knew the instrument existed, who only know that the system sees them as a problem to be managed rather than a person worth defending.
The burden scale is not a side issue. It is the architecture of everything that followed.
What the Zarit Burden Interview Actually Asks
The Zarit Burden Interview is the most widely used instrument in family caregiver research. It has shaped 35 years of studies, funding decisions, and program design.
Here are a few of its questions:
Do you feel your caree is dependent on you?
Do you feel angry when you are around your caree?
Do you feel that your caree currently affects your relationships with other family members or friends in a negative way?
Do you feel uncertain about what to do for your caree?
Question after question asking the family caregiver to sit with the hardest, most painful parts of her experience and rate them on a scale. No warmth. No context. No acknowledgment that she is a whole person before and after she fills it out.
The professional scores it. Files it. The family caregiver leaves having named her anger, her exhaustion, her sense of losing herself — with nothing given back.
Read the full Zarit and you’ll find question after question asking the family caregiver to rate her worst feelings about her caree. How angry do you feel? How embarrassed? How much of a burden is he?
Some of the questions don’t even measure a feeling. They measure a fact, and then score the fact as if it were a symptom.
Take this one: Do you feel your caree is dependent on you?
Of course she does. Dependence is not a side effect of caregiving. It is the definition of caregiving. A daughter caring for a parent with dementia. A spouse managing a partner who can no longer drive. A parent caring for a child with a disability. The dependence is the premise of the relationship, not evidence of distress within it.
But the instrument can’t tell the difference between a family caregiver who finds that dependence devastating and one who finds it simply true. Both answers score the same. The scale has no room for “yes, and that’s fine.”
Then there’s this one: Do you feel you should be doing more for your caree?
There is no honest answer to that question that isn’t guilt. Every family caregiver, no matter how much she gives, can imagine doing more. The thought haunts them. The question on the index manufactures the feeling of failing, then records that feeling as data.
One question confirms a fact and calls it a symptom. The other asks her to judge herself against an impossible standard and calls the verdict a score.
That’s not measurement. That’s an instrument built to find burden everywhere it looks because it would find burden in a Tuesday.
This is considered evidence-based. It has been validated, cited, and used in thousands of studies.
The Zarit Burden Interview was developed in 1980. It is still the field’s go-to instrument 46 years later. The questions haven’t changed. Neither have the findings. That’s not evidence of a good instrument. That’s evidence of a field that stopped asking whether it should keep using one.
How It Survived
Most professionals using the Zarit didn’t choose it. It was handed to them as the standard, in training programs, research protocols, documentation requirements. Using it feels responsible because everyone else uses it.
That is how a harmful instrument survives 46 years. Not because professionals are callous. Because the field never made room to ask: What does this do to the person filling it out?
A professional who has never been a family caregiver may not feel the weight of being asked to rate her anger toward her father. She scores it, norms it, files it. The instrument feels clinical and neutral because she is on the outside of it.
The family caregiver is on the inside of it.
Earlier in this series, a nonprofit executive running a Day Respite Program reached out to me after reading Part 1. He planned to integrate the Zarit 7-item instrument into his program’s impact measurement. He had a genuine question: How do you measure relationships? How do you measure “am I still me?”
I told him:
Our Certified Caregiving Consultants use an 8-question assessment that includes this question: Who and what do you love? You can follow up that question with: How often do you spend time with who and what you love? When they spend more time with who and what they love, they are themselves. That’s worth measuring and that’s an amazing impact created because of your respite program. We do often paint a picture of family caregivers as stressed, burdened, diminished. We can pivot to this assumption: They are valuable humans with important values and priorities. When we change the questions we ask, we change our work and the impact of our work in family caregivers.
Two questions. Not twenty-two. And neither one asks the family caregiver to rate anything about the caree.
The executive at the respite program reached for the Zarit because the field handed it to him as the standard. This series gave him a different starting point. The right questions were available. They just weren’t in the instrument the field chose.
That exchange is the argument in miniature. A caring professional, trying to do right by the family caregivers in his program, about to use an instrument that would ask them to rate only their burden because no one had given him an alternative.
The Zarit survives because the field keeps handing it to the next generation of professionals as the only option. The professionals use it because everyone else does. The family caregivers fill it out because they’re asked to. And the data comes back showing family caregivers are burdened, which confirms the instrument’s validity and starts the cycle again.
That’s not evidence. That’s a closed loop.
What It Asks a Family Caregiver to Do
Think about what it actually requires.
Sit down. Rate your anger. Quantify your frustration toward someone you love, or loved, or have complicated history with. Then hand it back.
It doesn’t ask how she’s sleeping. It doesn’t ask what she’s given up. It doesn’t ask who she was before this started or who she wants to be when it’s over. It doesn’t ask how she sustains herself during a complex, complicated marathon called caregiving.
It asks her to rate him.
Using it feels responsible because it’s standardized, validated, and what the field has always done. But responsible to whom? Not to the family caregiver sitting across the table being asked to rate her anger toward her father.
That’s not a research instrument. That’s harm with a scoring rubric.
Consider what happens next.
She needs help. So she complies.
She doesn’t fill out the Zarit because she finds it useful. She doesn’t gain insights into her experience because she completes it. She doesn’t rate her anger because naming it brings her relief. She gives a number to each question because the system — the program she wants to use so she can get help — requires it. The assessment is not offered as support. It is the prerequisite for support. Pay the toll, then maybe we’ll let you through the gate.
That is not a measurement problem. That is a power problem.
The burden scale is not just measuring burden. When the family caregiver sits across the table and answers those questions in order to qualify for help, the burden scale becomes the burden. The instrument is the system. And the system — as it has always done — requires something from her before it gives anything back.
She complies because she has to. Not because she wants to.
The field calls this evidence-based care. Family caregivers call it the price of entry.
The advocacy organization representing family caregivers calls it a recommended tool.
Next: Part 8 — The Question the Field Never Asked
For 46 years, the field has asked family caregivers to rate their burden. It has never asked how they felt after doing it. Part 8 asks that question — and shares what we found when we finally did.
Resources
- Put a dollar amount on your caregiving work. When you calculate your value as a family caregiver, you provide us with the insights that help us effectively advocate for and about you. The calculation takes less than 5 minutes and you’ll leave with your own insights into your worth and a social media card to share. When you share your social media card, be sure to share your story. Calculate your value: https://www.careyearsacademy.com/caregiving-resources/tools/costs/save/
- Want to know what it costs your community when family caregivers don’t get the help and support they need — and stop spending within their communities? Calculate the impact here: careyearsacademy.com/caregiving-resources/tools/costs/
(Image by Mohamed Hassan from Pixabay.)
