(Part 1 of 5 · A Series on Why the Caregiving Field Keeps Getting It Wrong. We take a deeper dive into the short-comings of caregiving research and what we do better going forward.)
In May 2026, a researcher at the University of Lucerne published a peer-reviewed paper in the Journal of Multidisciplinary Healthcare with a quiet but devastating conclusion. After reviewing decades of family caregiver burden research, Armin Gemperli wrote:
“At this point of diminishing returns, additional studies yield more repetition than revelation.” — Gemperli, 2026
He called it research waste.
I call it familiar.
In August 2010, I published a blog post asking whether the caregiving field needed more research. I argued that we were over-researching the experience and underspending on the services that would actually help family caregivers. I wrote:
“Researching a disease is about finding a solution. Researching an experience is about making it better.”
That post went largely unnoticed. It took 16 years and a peer-reviewed paper for the academic literature to arrive at the same conclusion.
I’m not bitter about that. I’m interested in what it tells us.
Nearly 100 Years of the Same Finding
To build his argument, Gemperli ran two PubMed searches on January 12, 2026 — one examining annual publication counts for caregiver burden research, one scanning original research articles published in 2025 across nine major open-access healthcare journals: BMC Geriatrics, BMC Health Services Research, BMC Nursing, BMC Public Health, BMJ Open, Nursing Open, PLoS ONE, SAGE Open Nursing, and the Journal of Multidisciplinary Healthcare. What he found was not surprising. What made it worth publishing was how long it had been going on.
Family caregiver burden, he noted in his abstract, has been documented for “nearly a century.” Early 20th-century observations had already identified that prolonged caregiving strains family relationships and can lead to the disintegration of family life. Since then, an ever-expanding body of research has repeatedly confirmed that family caregivers across diverse conditions and cultures commonly experience high levels of burden.
Nearly 100 years. The same finding. Over and over.
The research didn’t uncover something new each time. It confirmed what it had already confirmed. And then it published the confirmation. And then it published it again.
This is not science advancing. This is science running in place.
The Caregiving Research Didn’t Change the Experience
The research field has never had to answer: if the research was working, family caregivers would be less stressed today than they were 30 years ago.
They are not.
Since December 2015, I have run an ongoing stress survey. More than 1,359 family caregivers have completed it. They rate their stress on a scale from 1 to 5.
4.08 out of 5 ~ Average stress rating — 1,359 family caregivers, ongoing since December 2015
77.5% of family caregivers rate their stress a 4 or a 5. Nearly 8 in 10 at near-ceiling stress levels. And this is not a snapshot from 1995, before the research accumulated. This is ongoing data collected through 2026 — after nearly 100 years of burden research, after thousands of published studies, after the Zarit Burden Interview and the Caregiver Strain Index and Caregiver Identity Theory and the CARE Act and every intervention the field has produced.
The stress hasn’t changed. The research didn’t change it.
If burden research produced better outcomes for family caregivers, we would see it in the numbers. We don’t. What we see is 4.08 out of 5 — nearly unchanged, decade after decade, study after study.
The research documented the problem. It did not solve it. And at some point — arguably around 1995, certainly by 2010, and definitively confirmed by Gemperli in 2026 — the documentation became the problem.
How much did over-researching cost? I have tried to find a number related to how much funding has supported all this over-researching. I wasn’t successful. I do know that a caregiving researcher who recently retired referenced receiving $50 million in funding over the course of her career. $50 million is lot of money to keep the needle in the same spot.
The Same Question, Asked the Same Way
The burden research has been doing for nearly a century: asking family caregivers how hard it is.
Researchers ask that question using the same instruments, built on the same assumptions, validated against each other, and published in the same journals. Zarit Burden Interview. Caregiver Strain Index. Montgomery’s Caregiver Identity Theory. Each one measuring a version of the same thing: How much does caregiving cost the family caregiver in health, in work, in wellbeing, in identity.
The instruments confirmed each other. The journals published the findings. The field called it a body of evidence.
It became a closed loop.
When every instrument starts from the same premise — caregiving is something that happens to a family caregiver — every instrument produces the same kind of data. The data looks consistent.
Consistency gets mistaken for truth. And so the field kept researching. And kept finding the same things. And kept publishing them.
In 2002, a researcher from Australia attended a caregiving conference I attended in the United States and asked me a question I have never forgotten:
“Do you do anything besides research?”
The answer, 24 years later, is still mostly no.
The Premise That Was Never Questioned
Gemperli named the symptom. Additional studies yield more repetition than revelation. But he didn’t fully name the cause.
The cause is the premise.
Every major research instrument in the family caregiving field was built on an assumption so foundational it was never examined: that caregiving is something that happens to the family caregiver. A burden imposed by a caree’s diagnosis. A cost measured in health outcomes, work disruption, and psychological strain. That a family caregiver’s experience can only be measured through the experience of being a caree. That a family caregiver and caree become one because they share an experience.
That premise produces burden scales. It produces intensity scores. It produces ADL checklists that ask family caregivers to report on bathing, dressing, feeding — the visible, hands-on tasks that look like care to the researcher designing the instrument.
What it never produces is data about what the family caregiver actually does. What it never produces is a number that reflects the value of what they contribute. What it never produces are answers to a question as simple and as important as:
How are you?
In May 2026, I launched the Non-Reimbursed Family Caregiver Savings Calculator, a free tool that asks family caregivers to name their work across 9 domains and 53 types of care, then values that work at professional market rates. In 17 days, 391 family caregivers from around the world used it voluntarily. Their average annual value: $155,190. Their average lifetime value: nearly $2 million. Together, 391 family caregivers calculated $60.7 million in annual non-reimbursed care. I collected this data without a grant. Without funding. Without an IRB. Without an ADL scale. Without asking a single question about the caree.
The most selected single care type across all 391 responses was not personal care. Not medications. Not bathing or dressing.
It was Relationships. Managing the relationships between family members, between the family and providers, between siblings who disagree, between a caree and their care team. 86% of family caregivers selected it. That finding has never appeared in nearly 100 years of burden research. Not because it isn’t true. Because the instruments were never designed to find it.
81.1% selected Worries & Uncertainty — managing the ongoing anxiety of not knowing what comes next. Family caregivers who selected it averaged 61.4 hours per week and $174,060 per year in value. Those who didn’t averaged 28.7 hours and $74,357. The deeper the caregiving experience, the heavier the worry. That is not a burden scale finding. That is a portrait.
The worry doesn’t end when the caregiving tasks are done for the day. Our timestamp data shows that Worries & Uncertainty peaks at 86.8% among family caregivers who calculate their value in the evening — after the caregiving day is over. The tasks are complete. The worry remains. That is exactly what 4.08 out of 5 looks like in practice.
What Consistency Is Not
The burden research did not fail because researchers were careless or dishonest. It failed because the instruments were consistent and the premise was wrong.
Thirty years of consistent data built on the wrong premise is thirty years of consistently missing the family caregiver.
Gemperli’s paper is the first peer-reviewed acknowledgment that the repetition itself is the problem. That the field has been running in place. That more research of the same kind will not produce different knowledge.
I published that argument in 2010, in a blog post. I have been making it in one form or another for three decades. And in May 2026, a researcher at the University of Lucerne confirmed it in a peer-reviewed journal.
I am glad the literature is catching up. But I am more interested in what we do next.
What We Should Have Done Instead
We should have asked different questions earlier.
Not what tasks does the family caregiver complete for the caree but how does the family caregiver manage an experience across 19 different caregiving systems?
Not how hard is caregiving but what takes up too much time during a caregiving day?
Not how does caregiving diminish a family caregiver but what is the family caregiver’s work worth?
Not how one-dimensional a family caregiver is but what sophisticated skills does a family caregiver use to sustain their own quality of life?
Not how do we measure burden but how do we reflect value?
The calculator asked those questions. 391 people answered in 17 days. Without a grant. Without an IRB. Without an ADL scale. Without asking a single question about the caree.
That is not a research critique. That is a proof of concept.
The field spent nearly a century documenting the same thing. The data from my stress survey confirms what happened: 4.08 out of 5. Nearly 100 years of burden research saw that number coming and published another study about it.
Family caregivers deserved better.
(Part 2 of this series looks at what the field chose not to research at all and what that silence has cost.)
