By Varshini Chellapilla
Two student researchers from the Penn Memory Center delivered key presentations on the measurement of gender and the effects of stigma in Alzheimer’s research at the Alzheimer’s Association International Conference – Neuroscience Next (AAIC-NN) in November.
Mehek Dedhia, a sophomore at the University of Pennsylvania studying neuroscience, and Hannah Cao, a Master of Social Work graduate student, presented at the neuroscience conference that promotes the work of early-career researchers and students in the field.
Dedhia and Cao’s presentations were produced under Shana Stites, PsyD, MA, MS, a researcher at the Penn Program on Precision Medicine for the Brain (P3MB). Dr. Stites’s research aims to understand the ways in which quality of life and psychological wellbeing can be improved for those with Alzheimer’s disease dementia. Her work focuses on how aspects of identity (such as age, gender, and race) affect the disease experience.
Dedhia’s research analyzed stigma of experiencing Alzheimer’s disease among participants of the Cognition Across Time (CAT) study. The participants were divided into two groups – a group of participants that did not know the results of their Alzheimer’s disease biomarker or gene test and a group that did. Both groups were asked questions from a scale that measures stigma.
“What we found was that the hypothetical group expected a higher amount of stigma,” Dedhia said. “They endorsed higher stigma reactions on most of our questions as compared to the experiential group. That goes to show that the perceived stigma of learning the results of an Alzheimer’s disease biomarker test is actually higher than the experienced stigma.”
Dedhia concluded that anticipated stigma could create a barrier for recruitment in research focused on Alzheimer’s disease prevention. She poses that interventions aimed to reduce the anticipated stigmas could help increase the number of potential participants in prevention research.
“This is a very preliminary analysis,” Dedhia said. “We are waiting on some further data. We’re hoping to see if there are other factors that affect these reactions.”
Dr. Stites herself became interested in the effects of stigma toward people with Alzheimer’s disease when she came to join P3MB five years ago.
“It is such a key part of the patient experience,” Dr. Stites said. “We see it as the lived experience of being a patient with Alzheimer’s disease, or a patient who is cognitively typical but undergoing gene or biomarker testing. It shifts both your psychology as a person and how you think about yourself and your future, as well as how other people treat you when they know that information or they are even sort of assuming about you.”
Another arm of Dr. Stites’s work dealt with the role of the patient’s identity in the way Alzheimer’s disease is studied.
Cao’s presentation focused on how researchers measure gender and sex when conducting Alzheimer’s disease research.
“Researchers are saying there are gender differences in aging and Alzheimer’s research, but what they actually mean by gender tends to go unreported,” Cao said. “How are they asking these questions? What do they mean when they say ‘feminine’ or ‘masculine’? The meanings of these words are constantly changing.”
Dr. Stites, Cao, and their team are not the first to ask these questions. One of the most common tools used by researchers to define gender is the Bem Sex-Role Inventory (BSRI). Developed by social psychologist Sandra Bem in the 1970s, it aims to measure someone’s sex role (masculine, feminine, or androgynous) based on the traits or behaviors an individual believes themselves to express.
Cao analyzed research articles from the past 20 years that reported using the Bem Sex-Role Inventory. She noticed that despite this being one of the most widely-used measures of gender and Cao reviewing 20 years of published literature, the science of what we know about how well this tool measures gender in older adults, including those from diverse sociodemographic backgrounds, is really quite sparse. She also took note of the fact that the original sample used by Bem to create the tool was “all-white, all educated undergraduates at Stanford University.”
“My presentation was making the argument that we need to improve the way we study gender,” Cao said. “One example of how we can improve is by looking at this tool that we still use, question why we still use it and determine whether it’s effective or relevant. If it is not, what can we do to make it better? Or should we start from scratch?”
Cao’s team is currently reviewing 2,000-plus literature and research articles that have reported using the BSRI since the tool’s inception to see how the tool and data have been used over time. The results of the review are expected to help characterize ways gender has changed in the United States over the last four decades and examine what these trends might mean for older adults today and in coming decades.
The ultimate goal of her work is to help inform efforts to measure gender in a concise and inclusive way that is relevant to aging and Alzheimer’s research.
“A lot of researchers have realized that we don’t know what we mean when we say ‘gender’ anymore,” Cao said. “It’s a social construct. Society, and with it gender norms, have changed. There is very little work on creating an accurate gender measuring tool, or studies that explore the meaning of gender and its impact in research. That’s why Dr. Stites’ work, and working with her, has been really interesting for me.”