Are You Worried About a Loved One? Why Dementia Is Missed for Years
- Feb 6
- 3 min read
Why Dementia Is Missed—And Why Families Notice First
Most families I work with tell me the same thing, often in hindsight:
“I knew something wasn’t right long before anyone called it dementia.”
If you are worried about a loved one—because of changes in memory, judgment, personality, or the way conversations unfold—you are not imagining things. And if you have struggled to get those concerns recognized, you are not alone.
Why Dementia Is Missed In The Medical System
The medical system is built around a specific assumption: that the patient sitting in front of the clinician has intact cognition.
Medical visits rely on a patient’s ability to:
Describe symptoms accurately
Remember timelines
Follow explanations
Advocate for themselves
That model works well for many medical conditions.
It does not work well for dementia.
Dementia quietly breaks the very assumptions our healthcare system depends on.
In short visits, many people with dementia sound fine. They compensate. They fill in gaps. They minimize changes they do not recognize as abnormal. As a result, dementia is often missed—sometimes for years.
Snapshots Versus Patterns At Home
Clinic visits provide snapshots.
Families live inside the movie.
At home, caregivers see patterns:
Reasoning that no longer works
Subtle changes in judgment
Shifts in behavior or personality
Tasks that used to be easy becoming confusing or impossible
These changes often do not show up clearly in a fifteen-minute appointment, especially early in the disease.
This does not mean anyone has failed. It means the system was not designed to track slow, progressive cognitive change over time.
Why Families Are Left Exhausted Before Diagnosis
By the time dementia is formally recognized, many caregivers are already overwhelmed.
That is because dementia is not just a medical diagnosis.
It is a caregiving journey—one that begins long before a diagnosis is ever made.
Without education or a framework for understanding what they are seeing, families often:
Question their own instincts
Feel guilty or frustrated
Struggle alone while waiting for clarity
Earlier understanding changes everything.
Why I Created Better Dementia™
I created Better Dementia™ to support caregivers from the very beginning—before crisis, before burnout, and often before diagnosis.
Better Dementia™ offers a self-paced, clinically grounded education course designed specifically for caregivers. It does not assume medical knowledge. It does not assume a diagnosis. In fact, most families I work with do not yet have one.
The course teaches caregivers the what, when, and why of dementia—so they can:
Make sense of what is happening
Recognize when things shift
Understand why changes occur
Learn how to respond with confidence and compassion
If You Are Worried About A Loved One
If you are worried about a loved one and feel like the system is not seeing what you are seeing, you are not wrong—and you are not alone.
Education changes everything about this journey.
You can learn more about my dementia caregiving course at BetterDementia.com
Dementia does not begin with a diagnosis.
It begins at home.
Amy Shaw, PA-C is a nationally recognized dementia care clinician, educator, and author of The Arc of Conversation: A How-to Guide for Goals of Care Conversations. She is the founder of Better Dementia™, where she helps families understand the what, when, and why of dementia so they can master the how of caregiving with confidence and clarity.
