I Never Tell a Person with Dementia That They Have Dementia
- Jan 16
- 3 min read
Updated: 5 days ago
Loss of Insight in Dementia: Why I Never Tell a Person with Dementia Their Diagnosis
I never tell a person with dementia that they have dementia.
This statement tends to stop people in their tracks.
It sounds radical. It sounds counterintuitive. And to clinicians trained in traditional medical ethics, it can sound wrong.
But it is not provocative for the sake of being provocative.
It is grounded in experience.
Over the years, families have repeatedly told me the same story: the moment their loved one heard the diagnosis, everything changed. They fired the doctor. They turned their family into the enemy. They refused medical care, stopped necessary medications, and lost trust in the very people trying to help them.
That reaction is not rare. It is predictable.
And it reveals a deeper problem in how we approach dementia care.
Dementia Breaks the Assumptions Medicine Is Built On
Modern medicine is built on a model that assumes intact cognition.
It assumes that the patient can accurately recognize changes in themselves, remember what has happened, report symptoms reliably, and make sense of complex information about risk, prognosis, and treatment.
Dementia breaks that assumption—by definition—at the outset.
One of the earliest and most misunderstood features of dementia is loss of insight in dementia, a neurological change that affects the brain’s ability to recognize and understand its own decline. This is not denial. It is not stubbornness. It is a neurological change that affects the brain’s ability to recognize, remember, and integrate information about itself.
Asking a person with dementia to meaningfully process a dementia diagnosis is often asking them to do something their brain can no longer do.
When we insist on doing so anyway, we frequently create fear, mistrust, and resistance—without improving care.
Truth-Telling Without Context Can Cause Harm
This is where conversations about dementia often go wrong.
The diagnosis is treated as a moral imperative to disclose directly to the patient, without adequate consideration of what that disclosure will actually accomplish.
In many cases, it accomplishes very little clinically—and causes significant harm relationally.
Families are left to manage the fallout.
Care becomes harder, not easier.
Trust erodes.
Safety risks increase.
This is not ethical clarity. It is ethical rigidity.
The Diagnosis Is for Families. The Care Is for the Person.
Families are the ones who need to understand the diagnosis.
They are the ones making decisions, coordinating care, monitoring safety, managing medications, and adapting the environment as the disease progresses.
They need a clear explanation of what is happening in the brain, what changes to expect, and how dementia alters communication, behavior, and function over time.
The person with dementia needs something different.
They need care that preserves dignity, reduces distress, and supports their remaining abilities—without forcing them to confront information that may only confuse or frighten them.
That distinction matters.
Dementia Demands a Different Model of Care
Dementia is not simply another diagnosis to be delivered and managed using standard medical scripts.
It is a condition that fundamentally alters how information is processed, how relationships function, and how care must be structured.
When we fail to adapt our model, families pay the price.
When we center families appropriately and adjust how we communicate with the person living with dementia, care becomes calmer, safer, and more humane.
This is not about withholding truth.
It is about understanding what truth does in a brain that is changing.
And it is about practicing medicine—and caregiving—in a way that actually works.
—
Amy Shaw, PA
Founder, Better Dementia
