Alzheimer’s disease is the sixth leading cause of death in the United States and the fourth leading cause of death among African Americans.
Once patients have the disease, there is no treatment available that can stop its progression.
The Penn Memory Center seeks to change that.
Last month, the Penn Memory Center partnered with African Americans Against Alzheimer’s by offering two free shows of the award-winning play “Forget Me Not” at Philadelphia’s Freedom Theater to show how devastating Alzheimer’s is to both those inflicted with the disease and their caregivers. An expert panel question and answer session followed each performance.
Panelists included: Felicia Greenfield, associate director for clinical and research operations at the Penn Memory Center, who moderated the first panel, Steven Arnold, MD, director, Penn Memory Center, Jason Karlawish, MD, associate director, Penn Memory Center, Florence Collins-Hardy, a Penn Memory Center research participant, Garret Davis, director of Forget Me Not, Jerry Johnson, MD, chief, division of Geriatric Medicine, Selam Negash, PhD, research associate, Penn Memory Center, and Stephanie Monroe, director of African Americans Against Alzheimer’s, a division of USAgainstAlzheimer’s. The event was also made possible by the efforts of Tigist Hailu, coordinator for diversity in research at the Penn Memory Center.
The panelists tackled questions ranging from ongoing research at Penn and other academic medical centers, whether Alzheimer’s disease is hereditary (genes have been discovered that increase one’s likelihood of developing Alzheimer’s and dementia), how the average age of Alzheimer’s onset varies by ethnicity, the difference between dementia and Alzheimer’s, and other areas.
“Forget Me Not” demonstrated how Alzheimer’s can destroy relationships, especially as loved ones may be slow to accept that their friend or relative is experiencing the disease.
The show brought to light the question of when to seek help for memory problems, and the panel offered their insight.
“If you’re noticing changes in your cognition that bother you, that get in the way of your everyday activities or otherwise concern you, or someone who knows you well notices those, you need to have that evaluated,” said Karlawish.
Arnold echoed this sentiment by sharing that it’s common to have that “tip of my tongue” moment as you forget a word, or walk into a room and not know why.
“These become more common as we get older, but that’s normal aging,” said Arnold. “Where we get concerned is when it’s bad enough that it impairs our day- to- day ability to carry out business. That’s what we know as dementia.”
Karlawish urged those in this position to get checked out early by a qualified physician to discuss any memory troubles, noting that although many neurologists, psychiatrists, and internists are trained to diagnose memory issues, not all regularly see patients who experience memory problems and have a focus in this area.
“Not all memory problems in older adults are Alzheimer’s,” said Arnold. “It could be an under-active thyroid gland. Your stomach may have lost some ability to absorb vitamins, and that can cause memory issues.”
The panelists expressed the critical role clinical trials play in finding better treatments for Alzheimer’s disease. These efforts study or test a new procedure, drug, or vaccine for prevention, treatment, screening or improving quality of life for Alzheimer’s patients and those at risk of the disease.
Monroe urged audience members to serve as ambassadors to their neighbors, friends, and loved ones about this disease and share the resources available at the Penn Memory Center for clinical care and Alzheimer’s research.
“Alzheimer’s disease is devastating for anyone regardless of your race or gender, although we know in some communities it’s particularly devastating,” said Karlawish. “I’m convinced we can figure out who is and why they are at higher risk of developing the disease.”
Karlawish mentioned Penn’s research cohort study partnering with other centers nationwide to measure brain function, perform neuroimaging, autopsies and more, to see how cognition changes with life.
“We need to understand the disease better and develop a treatment now to help those with the disease and also prevent it in the future,” said Arnold.
Arnold announced to the audience a phase III study, the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study (A4 for short), that is investigating a drug intervention that may reduce the impact of a protein known as “amyloid” or “beta amyloid” in the brain. Scientists believe that elevated amyloid may play an important role in the development of AD-related mental deterioration.
It is the first study designed for people with normal brain functioning, but may have some amyloid pathology, to clear those amyloid lesions in the hopes of preventing memory loss.
Monroe noted that African Americans make up 13 percent of the U.S. population and 20 percent of those with Alzheimer’s. Fewer than three percent of African Americans sign up to participate in clinical trials. The estimated financial cost of Alzheimer’s is $200 billion a year, in stark contrast to the $500 million currently spent annually on research in this area.
“We need to band together to increase minority participation – and African American participation in particular – in clinical trials. It’s the only way to ensure that new drugs, treatments and therapies are both safe and effective for our community,” said Monroe. “By going straight to the heart of communities, we hope to spread the word and make a real difference.”
Photo above (from l to r):
Felicia Greenfield, LCSW, Penn Memory Center
Garrett Davis, playwright and actor of “Forget Me Not”
Florence Collins-Hardy, Penn Memory Center research participant, enrolled in the PMC brain donation program
Dr. Steven E. Arnold, Director of Penn Memory Center, Perelman School of Medicine
Dr. Jason Karlawish, Associate Director of Penn Memory Center, Perelman School of Medicine
Stephanie Monroe, Director of the African American Network Against Alzheimer’s
Photo below (from l to r):
Sandy Lawrence, Penn Memory Center Community Advisory Board Member
Tigist Hailu, Coordinator for Diversity in Research, Penn Memory Center
Stephanie Monroe, Director of the African American Network Against Alzheimer’s