(Part 2 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.)
Part 1 of this series documented nearly 100 years of the same research finding repeated across thousands of studies: family caregivers experience high levels of burden. Armin Gemperli called it research waste in May 2026. I called it familiar.
But over-researching the wrong thing is only half the problem.
The other half is what the field chose not to research at all.
While the burden researchers were running in place, an entire body of knowledge about the family caregiver experience was going uncollected. Not because the questions were unanswerable. Because they were never asked.
It started with the definition. And what the definition assumed.
My parents loved me. They really didn’t get me.
My mom wanted me to be married and raise a family. My dad wanted me to have a successful business. My struggling solo entrepreneur life as a single woman just confounded them.
They had an identity in mind of who I should be if I were to be happy. They made assumptions about me — that I was lonely, for instance — that simply weren’t true. Then they tried to solve those perceived problems. They wanted me to spend a lot of time with them.
I did spend a lot of time with them. I’m grateful I did.
But their assumptions about who I was were always off the mark. They wanted me to be a married mom and wife. I was a single, struggling business owner. Because I struggled, they assumed I had chosen the wrong identity, that my life would be better if I chose differently.
I never identified with the identity they wanted for me.
So it is with caregiving research. But I want to be specific about how.
My parents didn’t see me as I was. They saw me as I failed to be. Every observation they made, every solution they offered, started from a picture of me that wasn’t mine. The more I pushed back, the more they worried. The more they worried, the more they tried to fix what wasn’t broken.
The research field did the same thing. It decided who family caregivers are — burdened, diminished, defined entirely by the caregiving role — and then spent decades confirming it. Every study started from the same picture. Every finding confirmed the same image. The more data accumulated, the more certain everyone became.
Nobody stopped to ask whether the picture was right.
I once consulted with an organization that provides training for family caregivers. They believed that home health aide training, tailored toward family caregivers, met the only need they have.
I reviewed their content. I offered suggestions. At one point I had to stop and say: Everything you’re creating is only useful for someone who does nothing but hands-on care. You’ve built a routine for the family caregiver that has no room for anything else. Family caregivers have a life. They need time for their lives.
The idea had never occurred to them. They didn’t seem to consider that family caregivers are multi-dimensional people with a life outside the caregiving role.
I lasted a few months as their consultant. My frustration level became too great.
But that organization is not the exception. It is the norm.
Here’s why. The systems around family caregivers — medical, legal, financial, the organizations that claim to serve them — function more smoothly when the family caregiver has no competing demands. No job to protect. No relationships to tend. No self to sustain. A family caregiver who is only a family caregiver is easier to categorize, easier to train, easier to dismiss when the appointment ends.
My sister-in-law once thanked me for being so helpful to our parents so she and her family didn’t have to be.
Our carees often prefer that only we provide care, not strangers.
Everyone else in the system benefits when the family caregiver disappears entirely into the role.
And that is precisely the problem.
When everyone around you needs you to be only the family caregiver, any part of you that exists outside the role becomes invisible — to them, and eventually to the research that is supposed to study you.
Researchers never asked how family caregivers keep a life during caregiving. They didn’t ask because they never saw the life. They saw one dimension. They measured one dimension. They published findings about one dimension. And they called it a body of knowledge about family caregivers.
It was a body of knowledge about the role. Not the person.
Here’s what that costs.
In our stress survey of 1,359 family caregivers, the number one reported cause of stress wasn’t the medical tasks. It wasn’t the financial strain. It wasn’t the physical exhaustion.
It was this: I miss my life. 69.4%.
Nearly seven in ten family caregivers named the loss of their own life as their greatest source of stress. That’s not a clinical finding. That’s a person telling you exactly what the research never thought to ask about.
When we built the Non-Reimbursed Family Caregiver Savings Calculator and asked 405 family caregivers what they actually do, 89.9% selected Sustaining — maintaining their own health, their home, their nervous system, their routines, their life.
They actively work to hold onto themselves. Without anyone acknowledging how hard that is to do. Without being seen for the courage to do it. Without any research instrument ever valuing it.
Because no research instrument ever thought to include it.
In its 2025 report, Caregiving in the US, AARP and the National Alliance for Caregiving describe family caregivers as invisible three times.
All three instances appear on the first two pages — the summary and the introduction. The very first thing AARP and NAC wanted you to know about family caregivers in 2025 is that they are invisible.
Then their definition of family caregivers follows:
Family caregivers are adults providing ongoing care to adults or children with complex medical conditions or disabilities.
The complexity belongs to the caree’s condition. The family caregiver exists only in relation to a diagnosis.
They named the invisibility three times. Then wrote the definition that causes it.
That’s not an oversight. That’s the problem in two paragraphs.
Family caregivers are not invisible.
They’re right here. Living the best they can during a life of caregiving, working to stay themselves while every system around them benefits from their disappearance.
The research missed them not because they were hard to find. It missed them because it never questioned who to look for.
A definition that reduces a family caregiver to a role will only ever find the role. It will confirm the same findings, fund the same studies, and miss the same person, decade after decade.
I miss my life. Nearly seven in ten family caregivers said it.
The research never heard them.
Resources
- Calculate your caregiving value.
- Check out our care economy calculators.
- Join me May 29 for “The Future of Caregiving: How Will We Care?” at 1 p.m. ET
- Join me June 12 for “The Nine Domains of Caregiving: Defining Your Value” at 1 p.m. ET
