It’s common knowledge that Alzheimer’s disease is associated with memory loss. A new study is looking into ways to ease the behavioral changes and agitation that often accompany the disease. Researchers are now looking for volunteers to take part in the study.

Juli Neuderfer keeps several photo albums of her family. This includes one that celebrates 50 years of marriage to her husband, Gary. 

Memories which Neuderfer keeps close. Photos which sometimes help Gary to remember.

“Once he’s out of his own environment, there's more agitation there's more confusion,” she said. “It’s painful.”

It’s been seven years since Gary was diagnosed with Alzheimer’s. It’s a slow progression — toward a definite end.

“As a caregiver it's frustrating,” she said. “At times you feel angry that so much has been stripped from you, and the relationship changes completely.”

The Neuderfers consider the people at the University of Rochester’s Alzheimer's Disease Care, Research and Education Program to be family. It's where Dr. Anton Porsteinsson has devoted his career to the care and study of people with memory disorders. People like Gary and caregivers like Judi.

“It’s almost like watching somebody die a little at a time,” she said.

“It is a very distressing problem for the patients themselves,” said Porsteinsson. “But in particular, also for their caregivers.”

Porsteinsson and University of Rochester researchers are working with Johns Hopkins to study the potential benefits of Escitalopram, a medication commonly used to treat mood disorders and anxiety, in helping Alzheimer’s patients overcome the agitation that often accompanies the disease.

“When people think of Alzheimer's disease and other dementias, mostly they think of the memory loss and the functional loss that comes with the advancing disease,” he said. “People focus less on the fact that almost everyone has a change in their behavior.”

Judi says Gary has taken part in several Alzheimer’s studies since his diagnosis. This one seeks 400 patients and their caregivers at 25 sites across the U.S. and Canada.

“I do think that eventually something will be found,” she said. “And the only way we're going to find something is to be the people who are part of the study process.”

“If we can do something to decrease the burden, reduce the risk of burnout, absolutely you can help people stay at home longer,” said Porsteinsson. “You can improve their personal quality of life.”

Until there is a cure, that’s the best that people living with Alzheimer’s — and their caregivers — can hope for.

“So yeah, it's been very hard,” said Neuderfer. “[It’s] very hard, and it's going to get harder. I think that's the hard part, is that there's no clear end in sight.”