Scientifically, great progress has been made in understanding how Alzheimer’s changes the brain, Penn Medicine physician Jason Karlawish told a 2016 Penn Alumni-Faculty Exchange audience. But despite research findings that suggest potential new approaches, there have been no dramatic changes in either the diagnostics or therapies currently available for the brain destroying disease.
Karlawish, MD, Co-Director of the Penn Memory Center, Director of Penn’s Neurodegenerative Disease Ethics and Policy Program (NDEP), and a Senior Fellow at the Leonard Davis Institute of Health Economics (LDI), was one of a number of top Penn experts taking part in April’s day-long series of health research-related presentations for the 50th anniversary gathering of the Penn Class of 1966.
Also a Professor of Medicine, Medical Ethics and Health Policy, and Neurology at Penn’s Perelman School of Medicine, Karlawish has spent 14 years with the Memory Center — a clinical and research facility located on the Penn campus.
Status of Alzheimer’s diagnostics
In response to Alumni-Faculty audience questions about diagnostic techniques that might predict the likelihood of developing Alzheimer’s, Karlawish offered an extended “good news/bad news” answer.
On the good news side, he said researchers around the country have made “tremendous progress with understanding the molecular and pathophysiologic signals” of what causes a brain to start developing disabling cognitive impairments like Alzheimer’s.
On the bad news side, he said the methods for diagnosing and treating Alzheimer’s have really changed little since the amyloid plaques and neurofibrillary tangles that characterize the disease were first discovered by German neuropathologist Alois Alzheimer in the first decade of the 20th century.
‘We’re not there yet’
“In the wings are various tests that have been developed here at the Memory Center and elsewhere that we hope will allow us to begin to try to diagnose and treat these diseases before someone is disabled,” Karlawish said. “But we’re not there yet; the work holds great promise as well as challenges that are another stream of our research.”
As an example of those challenges, Karlawish noted that some of the people in his center’s clinical trials — individuals with a high risk of developing Alzheimer’s — have to take a break from work to come to the center for their infusions.
“Imagine,” he said, “if one of YOUR colleagues at work looked at his watch and told you, ‘Oh, I’ve got to leave a little early because I have to get to my Alzheimer’s trial.”
The Alumni-Faculty audience erupted in loud, nervous laughter.
“That’s my point,” said Karlawish.
Social and cultural challenges
“The other area of research we’re doing in addition to better ways to diagnose or treat the disease,” he said, “is to figure out better ways to learn how to live with the disease and address some of the emotional, social and cultural challenges we face as we push these diagnoses into increasingly more normal and non-clinically significant stages.”
In his role as NDEP Director, Karlawish in 2013 oversaw the creation of a unique new kind of Alzheimer’s Website called MakingSenseOfAlzheimers.org — that defines and explores those cultural issues. The playful, lively and upbeat consumer-like multimedia emagazine proclaims itself “a creative space for people to understand the past, present and future of Alzheimer’s.”
This article was originally written by Hoag Levins and published by the Leonard Davis Institute of Health Economics.