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URMC / Alzheimers Care / History


A physician discusses scans with a client

Who is AD-CARE?

The Alzheimer's Disease Care, Research and Education Program (AD-CARE) has conducted, directed, or consulted in clinical trials for Alzheimer's Disease and other dementias since 1986, including several landmark trials. We have been involved in over 250 clinical trials involving large local communities, in addition to those from the Finger Lakes region and the surrounding areas.

In the past, AD-CARE has played a role in numerous trials that helped support the approval of all medications currently used for Alzheimer's Disease treatment.  We have also been a leading enroller in several pivotal phase 3 trials, that aim to slow the progression of Alzheimer's Disease. Some recent trials offered through the AD-CARE Program have investigated medications previously approved for other diagnoses that may also be beneficial in the treatment or prevention of Alzheimer's Disease. AD-CARE has also had a fundamental role in a variety of studies that investigate non-cognitive symptoms of dementia, such as depression and agitation.  In addition to treatment studies, AD-CARE focuses on improving the scales, imaging, and diagnostic techniques that are used in the care of patients with Alzheimer's Disease.

A Brief History of Alois Alzheimer and His First Patient

On November 25th 1901, 51-year-old Auguste D was admitted to the Frankfurt Asylum in Germany and put under the care of Dr. Alois Alzheimer, who specialized in biological psychiatry.  These medical records would remain lost from 1909 until 1995, when they were found, fully intact, in the basement of the University of Munich. 

Amid these records were the brain tissue taken during Auguste D’s autopsy and a well-preserved photograph of the patient.  Alzheimer’s notes indicated Auguste D’s curious illness that would cause her to forget both her and her husband’s names and the names of common objects, in addition to disorientation, hallucinations, and an altered personality.  After performing her autopsy in 1906, Alzheimer found plaque deposits around her brain cells and twisted fiber bands, known as tangles, within the cells themselves.

It was only after finding these records in 1995, that scientists were able to unarguably conclude that Auguste D was in fact the very first documented case of Alzheimer’s Disease and the findings were a vindication for naming the disease after the German doctor.

Rochester Is Nation's Leading Alzheimer's Study Site

Author: Tom Rickey, University of Rochester Department of Public Relations

(March 2, 2006) - More people have taken part in Alzheimer’s studies at the University of Rochester Medical Center than at any other site in the nation, according to figures from the Alzheimer’s Disease Cooperative Study group, the premier collection of scientists nationwide who work together to test new treatments for the disease.

During the last five years, 130 people in the Rochester area took part in the group’s studies, a number nearly double the next-highest institution’s total of 68. Rochester’s numbers are even more significant when the size of the metropolitan area is compared to other cities like New York and Los Angeles, which also have study sites. ADCS includes 66 sites around the country.

“The altruism that people in Rochester show by taking of their time to do what they can to fight Alzheimer’s is remarkable and touching,” said Anton Porsteinsson, M.D., who leads the Rochester site. “Their efforts now will pay off perhaps for themselves, but more likely their children and grandchildren, as we continue to discover new ways to treat and hopefully prevent the disease.”

In the past 20 years, physicians at the University of Rochester Medical Center and their patients have taken part in virtually every large study of a potential Alzheimer’s medication. Their work has spanned a time when there were no medications approved to treat the disease, to today when an array of drugs is available to help fight symptoms such as memory loss, thanks in part to people who volunteered for early studies of the medications.

Among recent findings from such studies, University doctors have shown that a common seizure medication holds promise in the treatment of dementia, and they are playing a major role in a large study to test whether anti-inflammatory medications help prevent the disease.

Currently doctors and patients at the University’s Program in Neurobehavioral Therapeutics and its Memory Disorders Clinic are taking part in 14 studies. Efforts include a $60 million study to test whether new imaging techniques and other technology can be better used to assess and treat patients with memory loss and dementia, and tests of new compounds designed to better treat the disease, slow the cognitive decline it causes, or even prevent the disease outright.