Verified by 
We know that not all dementias are Alzheimer’s Disease. In fact, many people suffer from vascular dementia, or dementias due to Parkinson’s disease, alcohol abuse, head trauma, frontal lobe deterioration, and many other causes. Nevertheless, Alzheimer’s disease has become as synonymous with dementia as Kleenex with tissues and Xerox with photocopies. But what if Alzheimer’s disease was actually discovered by someone else?
Who Was Alzheimer?
Dr. Alois Alzheimer was a German psychiatrist and neurologist who worked in the early 1900s. At that time European scientists created specific brain tissue staining methods so that they could see cellular level changes in patients with specific neurological illnesses.
These new staining techniques revealed two important findings in the brains of patients with profound memory loss. First, there was often a buildup of a waxy protein, called beta amyloid, whose fibers clung together and formed “plaques.” The plaques destroyed connections between neurons (brain cells) and inside the cells themselves. Second, staining also showed that neurons collapsed and clumped together into “neurofibrillary tangles.” These plaques and tangles are the major structural changes typically seen in people diagnosed with Alzheimer’s dementia.
What most people do not know is that Dr. Alzheimer was not the first doctor to see these plaques in someone with severe memory loss. In 1892, some 14 years before Alzheimer’s publication, they were noted on an autopsy. In 1898, they were described again in two patients who had “senile dementia,” meaning that they were both over the age of 65 when their disease was diagnosed.
How Did It Become Alzheimer’s Disease?
During this time, doctors were correlating the clinical problems of their patients while they were alive with the autopsy findings after they died. So, the neuropathology centers, where brain autopsies were performed, were connected with psychiatry and neurology clinics.
This was also an exciting period in European scientific circles, with great advancements and fierce competition for who would get the best academic appointments and societal prestige. Naming or “branding” rights were extremely common and neurological diseases became known as Pick’s disease, Binswanger’s Syndrome, Lewy Body Disease, Creutzfeldt-Jakob disease, and, of course, Alzheimer’s Disease. Today, we rarely use this convention, having replaced it with more descriptive medical terms, such as Multiple Sclerosis, or abbreviations, such as CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy). But 100 years ago, your fame and fortune as a medical scientist were linked to your disease discovery and naming.
Fischer’s Disease?
At this same time in Prague, Dr. Oskar Fischer was working at the prestigious German Psychiatric Clinic. He was a protégé of Dr. Arnold Pick, the doctor who identified and described a frontal and temporal (side) brain pathology which became known as Pick’s Disease. In Pick’s lab, Dr. Fischer performed 81 brain autopsies, 16 of which were done on individuals who died with dementia. In 12 of those, Fischer found “senile plaques,” now known as beta amyloid plaques. He called them “miliary foci” and concluded that they were specifically associated with senile dementia. These foci became known as “Fischer’s plaques.”
However, as the saying goes, it is not what you know but who you know that counts. Dr. Fisher was working with Pick but Alzheimer worked in the lab of Dr. Emil Kraeplin at the Royal Psychiatric Hospital in Munich. Kraepelin wrote the first major textbook classifying psychiatric and neurological diseases. When Alzheimer discovered Fischer’s miliary foci, or senile plaques in the brain of his patient, “Auguste D,” it was surprising. Not because the plaques were there; Auguste D suffered from moderate to severe dementia. What made it shocking was her age. She had dementia at 51 and died at 56. She was too young to be considered senile. So she became the first known case of Presenile Dementia.
Presenile Dementia
When Kraepelin finished his textbook, The Handbook of Psychiatry, he considered Auguste D to be the textbook example of “presenile dementia.” Because of the difference in ages, he viewed Alzheimer’s plaques and tangles as being different from Fischer’s plaques and worthy of being named “Alzheimer’s Disease.”
Not much was done about any of these findings for some time and, over the years, Fischer’s work receded into obscurity. As recently as the early 1970s, the term senile dementia was used for someone who lost mental abilities after age 65 while Alzheimer’s Disease was reserved for the much less common cases of presenile dementia, people younger than 65. This changed in the 1970s when enough research demonstrated the diseases were exactly the same. Ultimately, Alzheimer’s became the universal term for this type of dementia regardless of when it began.
But regardless of whether it was called Alzheimer’s Disease, senile dementia or senility, little attention was paid to the disease until it impacted Evelyn Stone.
The Branding of Alzheimer’s Disease
Evelyn T. and Jerome H. Stone were a financially prosperous couple, living on the Gold Coast in Chicago. Mr. Stone was an astute businessman who pioneered the inclusion of advertising messages into packaging. He used his skills as a savvy fundraiser and board member to benefit various academic and arts-related institutions. However, none of this could help him to find answers in the medical community when his wife, Evelyn, started showing mild forgetfulness in the 1970s.
Driven by his personal experience, Mr. Stone was committed to making it better. He met with members of the National Institute of Aging (NIA) in November 1979 and began to address the lack of knowledge, research, and caregiver support for people suffering from dementia. By March 1980, the NIA designated the first $13 million for research targeting Alzheimer’s Disease. Mr. Stone organized family members, researchers, physicians and caregivers into a grass-roots volunteer group which he incorporated as the Alzheimer's Disease and Related Disorders Association, Inc, in April 1980. The association’s high visibility and superb messaging quickly heightened disease awareness. And, while the name remains as the Alzheimer's Disease and Related Disorders Association, Inc, the public knows it simply as the Alzheimer’s Association.
References
Adapted from Clionsky, E and Clionsky, M, Dementia Prevention: Using Your Head to Save Your Brain, 2023. Johns Hopkins Press, Baltimore, 276 pages.
