How Do We Know If It's Working

Jul 21

3 min read

Imagine two individuals diagnosed with mild Alzheimer's disease.

Both begin treatment.

One maintains independence, continues driving safely, manages medications successfully, and remains actively engaged in daily life.

The other experiences increasing functional decline, loses independence, requires medication supervision, and becomes increasingly dependent upon caregiver support.

Yet at their follow-up appointments, both continue to be described as having mild Alzheimer's disease.

How do we know whether the intervention is working?

How Do We Know If It's Working?

Diagnosis = Mild Alzheimer's

Successful Intervention = Mild Alzheimer's

Unsuccessful Intervention = Mild Alzheimer's

Diagnosis identifies disease.Planning determines outcomes.

That question has become increasingly important as Alzheimer's care enters a new era of earlier diagnosis and disease-modifying therapies.

Blood-based biomarkers continue to advance. Earlier detection is becoming possible. New therapies are creating opportunities to slow disease progression in ways that were unimaginable only a few years ago.

These advances represent remarkable progress.

They also introduce a new responsibility.

How should success be measured?

For decades, Alzheimer's staging served an important purpose. It described disease progression, helped clinicians communicate broadly about severity, and guided expectations for future care. With relatively few treatment options available, that level of description was often sufficient.

Today, however, Alzheimer's care is changing.

Earlier diagnosis and emerging therapies have shifted the conversation from simply recognizing disease to preserving function for as long as possible.

That distinction matters.

Because preserving function and describing disease progression are not the same clinical question.

To be clear, this is not a criticism of disease-modifying therapies.Quite the opposite.

Their emergence represents one of the most significant advances in Alzheimer's care in decades.

If we are making meaningful progress in treatment, we should also be able to measure meaningful progress in people's lives.

Yet our current language presents an interesting paradox.

An individual begins treatment with mild Alzheimer's disease.
If the intervention is successful, they may still be described as having mild Alzheimer's disease.
If the intervention is unsuccessful, they may still be described as having mild Alzheimer's disease.

The diagnosis hasn't failed; it is answering the question it was designed to answer.

Disease staging describes the progression of Alzheimer's pathology. It was never intended to measure how someone is actually functioning in everyday life.

Those are different questions.

Two individuals may share the same diagnosis and stage while experiencing dramatically different levels of independence, executive functioning, communication, safety, caregiver support, and quality of life.

None of those differences change the diagnosis.
All of them change the care.
They determine whether someone continues living independently.
Whether medications remain safe to manage alone.
Whether driving is still appropriate.
Whether meaningful relationships continue to flourish.
Whether family members remain spouses, daughters, husbands, and sons... or gradually become full-time caregivers.
These are not secondary outcomes.
They are the outcomes that define the lived experience of Alzheimer's disease.

This distinction affects everyone involved in care.

The physician identifies disease.
The neurologist sees progression.
The researcher evaluates outcomes.
The administrator considers systems of care.
The caregiver manages daily life.
The person living with Alzheimer's experiences all of it.

Each perspective contributes valuable information.

None, by itself, tells the complete story.

If our goal is to preserve independence, delay disability, reduce caregiver burden, improve safety, and maintain quality of life, then those outcomes deserve to be measured directly.