Latest News

The National Alzheimer’s and Dementia Resource Center is hosting a webinar series, sponsored by the Administration for Community Living. A presentation, titled “The Messages We Send: Stigma Toward Persons Living with Dementia and How to End It,” will be led by Penn Memory Center scholar Shana Stites, PsyD, MA, MS and Rev. Cynthia Huling Hummel, D.Min., who is living with early stage dementia.

Webinar participants will be able to:

• Describe and define types of stigma around dementia;
• Describe and give examples of the role of language in stigma around dementia;
• Define what it means to use a strength-based approach with persons who have dementia; and,
• List three examples of person-centered language to counter stigma around dementia.

The presentation is on Tuesday, May 7 at  2 p.m. ET. It’s free and open to the public, but registration is required.

By Janissa Delzo

Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, and PMC Scholar Cara Fallon, PhD, MPH, presented at the 2019 Alzheimer’s Disease-Related Dementias (ADRD) Summit.

The duo gave an 11-minute talk titled, “Stigma: Considerations of Ethics and History.” Karlawish kicked off the conversation by informing the audience of their goal: “to help understand how stigma is embodied in nomenclature.”

He went on to detail that stigma is “both a mark and a process” and has three types: self-stigma (internalized stigma), public stigma (externalized/enacted stigma), and spillover stigma (stigma by association). He also discussed the ethical implications of stigma.

Fallon, a historian, then took the mic and educated the audience about the history of terms used for intellectual and development disabilities in the U.S.

Karlawish and Fallon acknowledge that a change in words alone will not end stigma. Rather, beliefs and attitudes need to change. The language will “both lead and follow,” he said.

To view a video of the first day of the summit, click here. Karlawish and Fallon’s presentation begins at 6:31:37.

The ADRD Summit took place March 14-15, 2019 at the Natcher Auditorium on the National Institutes of Health campus in Bethesda, Maryland and was sponsored by the National Institute of Neurological Disorders and Stroke.

By Sharnita Midgett

A group of young scientists in Minnesota recently welcomed Penn Memory Center Co-Director Jason Karlawish, MD, into their classroom.

High school students in the Shattuck-St. Mary’s School bioscience enrichment program have been reading Karlawish’s 2011 historical novel Open Wound to enrich their study of the digestive system. Program Director Maren LaLiberty, MD, invited Karlawish to Skype in with the classroom before the students finished the book.

“There are certain aspects of anatomy and physiology that can really only be illuminated by stories,” LaLiberty said.

By Janissa Delzo

At the Penn Memory Center and Alzheimer’s disease research centers across the nation, research participants are essential to those studying neurodegenerative diseases and lifelong brain health. Without them, there could be no research.

Equally essential, though less obvious, is the study partner.

A study partner is someone who accompanies a participant to Alzheimer’s disease research visits and knows the participant well. Though this is frequently a spouse or adult child, it could easily be a friend, neighbor, or sibling-in-law who sees the participant often enough to accurately report on how the participant’s cognition and function is in their home environment.

Enrolling dyads — a participant and study partner — is often extraordinarily challenging, for a variety of reasons. But in order to advance Alzheimer’s research and get closer to the goal of treating and preventing the disease by 2025, as set forth by global leaders in the National Plan, it’s imperative to understand the challenges and barriers of study partner participation.

By Linnea Langkammer

Researchers often offer payment to research participants to reimburse them for expenses, to compensate them for their time and travel, or to incentivize their participation. New research suggests that offers of payment could actually drive participants to lie to researchers in order to meet enrollment criteria.

In the survey experiment, co-authored by Penn Memory Center Scholar Emily Largent, participants were offered a reimbursement for completion of an online survey. Over several experimental groups, researchers found that between 10.5% to 22.8% of participants falsely reported meeting the flu vaccine eligibility requirement when compared to a control group, which was paid regardless of flu vaccine status.