The Name Stayed. The Science Changed.

Names matter.

We give them to people, places, products, foods—and puppies.

Sometimes we choose a name because we love its meaning. Sometimes we wonder where a name came from. And sometimes, a name can mean very different things to different people.

Take Nimbus, for example. It was on my short list of names for a new puppy. When I heard Nimbus, I pictured dark clouds gathering before a beautiful snowstorm. My son heard Nimbus and immediately thought of the flying broomstick in Harry Potter. Nimbus was dropped from the list.

Then there are names we use every day without thinking much about their origins.

Alzheimer’s is one of those names.

Behind the name is a woman, a physician and a scientific discovery that changed how we understand memory loss.

A Name Is Just the Beginning
In 1901, German physician Alois Alzheimer met a patient named Auguste Deter at a psychiatric hospital in Frankfurt. Deter was in her early 50s and experiencing profound memory problems, confusion and changes in behavior.

Alzheimer was intrigued. Her symptoms seemed different from the forms of dementia commonly associated with older age.

He asked her a series of questions.

“What is your name?” “Auguste,” she answered.

“What is your last name” she replied “Auguste.”

“What is your husband’s name?” “Auguste, I think.”

Deter died in 1906. Alzheimer examined her brain and saw abnormalities that would become hallmarks of the disease: amyloid plaques and twisted fibers called neurofibrillary tangles, made largely of the protein tau.

That same year, Alzheimer presented his findings to colleagues.

The name stuck. The science did not.

More Than Meets the Eye
For much of the 20th century, Alzheimer’s disease was understood largely through what doctors could observe: memory loss, confusion and changes in thinking and behavior.

Gradually, neuroscience revealed a more complicated picture.

Scientists learned more about amyloid and tau. Genetics provided new clues about risk. Brain imaging offered ways to observe changes in the living brain. Researchers discovered that biological changes associated with Alzheimer’s can begin years before significant memory problems become apparent.

Today, biomarkers — including increasingly sophisticated blood tests — can detect some of these changes. These tools are helping researchers identify disease earlier and better understand how it develops.

The treatment landscape is changing, too. For some people in the early stages of Alzheimer’s, new treatments that target amyloid can slow disease progression.

Scientists are no longer looking only at whether someone is forgetting. They can increasingly investigate why.

Holding on to Memories
Alzheimer’s is not simply a story about proteins, plaques and tangles. It is a story about memories — and the people who hold them.

That is beautifully illustrated in the children’s book The Remember Balloons. A grandfather carries balloons filled with memories: his daughter as a child, his marriage, family adventures and a fishing trip with his grandson, James.

As Alzheimer’s begins to steal his memory, some balloons float away. James tries to catch them, but no matter how hard he runs, he cannot.

Confused and upset, James struggles to understand. Then his parents show him that although some of his grandfather’s balloons are gone, a new set now belongs to him.

James discovers he can keep those memories alive by sharing the stories with his grandfather. The balloons may have changed hands, but the memories — and the love behind them — can still be shared.

It is a simple, touching metaphor for something families experiencing Alzheimer’s know well: memory is precious, complicated and deeply connected to who we are.

More than 120 years after Auguste Deter became connected to the name Alzheimer’s, scientists still do not have all the answers. But we know vastly more than Alois Alzheimer did in 1906.

And that brings us back to where we began: with a name.

A name can mean different things to different people. To me, Nimbus meant snow clouds. To my son, it meant a flying broomstick. And for someone living with Alzheimer’s, a familiar name can sometimes become frustratingly difficult to retrieve.

But science is helping us understand why.

The name hasn’t changed. Our understanding has.

Happy reading,
Suzanne Daniels, Ph.D.