Insurance Covers the Diagnosis—But Not the Family Holding It Together
When someone we love begins to show signs of cognitive decline—whether due to Alzheimer’s, a traumatic brain injury, schizophrenia, or another neurocognitive condition—it doesn’t just change them. It changes everything.
Who they are. How they function. What they need.
But also—how the people around them live, relate, and cope.
The diagnosis is given to one person. But the illness is lived by the whole family.
The Numbers Are Stark. The Experience Is Often Invisible.
In the U.S.:
More than 11.5 million people provide unpaid care to someone living with dementia (Alzheimer’s Association, 2024).
60% of dementia caregivers report high emotional stress; around 40% report clinical symptoms of depression (CDC, 2023).
Between 50–75% of people with moderate to severe TBI require long-term care from family members (CDC, 2020).
Cognitive symptoms—like memory loss, disorganized thinking, slowed processing—are core to many psychiatric disorders, including schizophrenia and bipolar disorder. Yet families are rarely coached in what these symptoms mean or how to navigate them.
What these numbers don’t show is the emotional toll and the structural neglect caregivers face.
“You’re Not the Patient, So You’re Not the Priority”
Our healthcare system is largely built around a single-unit focus: one person, one diagnosis, one treatment plan.
The “patient” focus is important, but it’s also incomplete. The family’s experience is rarely part of the clinical conversation, unless it directly affects the patient's outcomes. Even then, it’s usually seen through the lens of patient compliance, not caregiver well-being.
In practical terms, this means:
Families are not routinely assessed for stress, coping, or capacity
There is no insurance reimbursement for most forms of family education or caregiver support unless it's tied to the patient’s treatment
Discharge planning focuses on patient instructions—not whether the family understands them, can implement them, or is emotionally prepared
Caregiver burnout is treated as a personal issue, not a systemic one
But neurocognitive conditions are relational illnesses. They destabilize routines, roles, and emotional bonds. Spouses become caregivers. Children become decision-makers. Families begin to grieve someone who is still alive but no longer quite the same.
And yet the family’s experience remains outside the clinical frame.
Why?
Because insurance reimbursement is tied to the patient.
If you're not the one with the diagnosis, the system is not designed for you.
That means:
No reimbursement for caregiver education or emotional support unless it's attached to the patient’s chart
No billable time for helping families understand how to manage behaviors, roles, or relational fallout
No systematic check on how prepared or capable the family is to implement the treatment plan
Discharge plans are written for patients, but are often assumed to be carried out by families, without assessing whether they’re emotionally, physically, or financially capable.
This disconnect isn’t just frustrating. It’s dangerous.
The Human Impact Is Measured in Silence
Caregivers are often juggling:
Emotional whiplash from unpredictable behaviors
Financial pressure due to lost work or increased costs
Chronic uncertainty: Will they stabilize? Decline? Recognize me next year?
Grief without a funeral. Love without reciprocity. Decisions without clear answers.
These families are:
Managing medications and medical appointments
Providing supervision and safety
Advocating across fragmented systems
Making heartbreaking decisions about autonomy and care
Absorbing unpredictable emotional fallout—often daily
They are asked to perform intimate, complex care tasks with little training. And they do it—because love is a part of it.
But many are left asking:
How do I keep showing up when I’m burning out?
How do I grieve someone who’s still alive?
What happens to me if I fall apart, too?
These aren’t side questions. They are the central, unspoken reality of caregiving in neurocognitive illness.
What Needs to Change
We need a system that sees the whole unit of care, not just the individual.
That means:
Including families in the treatment process from the beginning, not as an afterthought
Training providers to assess caregiver stress, grief, and capacity—routinely
Creating pathways for reimbursement for family education, coaching, and planning support
Expanding the metrics of “outcome” to include family stability, not just symptom checklists
Because the truth is simple:
When families are supported, people do better.
When they’re not, crises multiply—and the system ends up paying for it anyway.
Let’s Make Room for the People Holding It All Together
The person with the illness deserves care.
But so does the family doing the caring.
Let’s build systems that reflect that. Let’s tell the truth about what it takes.
And let’s stop acting like the patient is the only one who requires thought and care.