Ece Bayram, MD, PhD. Researcher from the Lewy Body Dementia Association’s Research Center of Excellence at University of California San Diego
December 12, 2023
Research suggests men have a higher risk for developing Lewy body dementia (LBD) than women. Let’s take a brief look into how so. LBD is associated with Lewy body pathology in the brain, that is, the presence of “clumps” of the misfolded protein alpha-synuclein. The chance of experiencing dementia is higher when the pathology is more widespread in the brain. Men are more likely than women to have the widespread Lewy body pathology1; and even when women do have widespread Lewy body pathology, they continue to be less likely than men to experience LBD2. There are also differences in the ways that men and women experience LBD. For example, men are more likely to act out their dreams and have movement problems, and women are more likely to be diagnosed incorrectly or late3.
We’re not entirely sure yet why men have a higher risk. Is it genetics? Some genetic risk factors can be more common in men, such as changes in the gene GBA4. In addition, some genetic factors may increase the risk for LBD more in men than they do in women5. What about the environment? From research in the general public (without any specific health conditions), we know that women and men are exposed to different environmental factors during their lifetimes. And even when exposed to the same environmental factors, female and male brains may have different reactions. While many risk factors for LBD have been identified 6 7, we are still seeking to understand how they interact with a person’s sex.
How do we figure all of this out? We turn to research, compare groups, and see if people with LBD report exposure to certain factors more than the people who do not have LBD. Fortunately, we know that the LBD community is willing to participate in research. As Lewy Body Dementia Association (LBDA)-supported researchers, we recently conducted a survey study with you, the LBD community, to ask about your research priorities. The results of that study showed us that you care about understanding risk factors and what is happening in the brain in LBD8.
Considering all these questions related to sex differences in LBD, as well as the research priorities of the community, we are excited to launch another survey study supported by LBDA. The study is entitled “Environmental and Reproductive Health Risk for LBD,” or LBD – TOROS. (This research is important to me personally, and I named the study after the Toros Mountains of my hometown in Turkey.) We seek to understand how biological, environmental, occupational, and socioeconomic factors impact the risk of LBD and whether and how the impact risk differs between women and men.
The survey is a one-time, anonymous questionnaire that can be completed over the phone or online, in about 30 to 45 minutes, at any time and from anywhere within the United States. We are looking for people with LBD of any age, from any background. We are also looking for people without thinking problems or other brain diseases as the comparison group.
To learn more and participate in our research study, you can go directly go to https://redcap.link/LBDTOROS
For the name and number of the study team’s contact person, visit the LBD – TOROS landing page on lbda.org.
The results of this study will help us and other researchers learn more about risk factors and predictors of LBD, critical steps on the path to effective treatments and prevention strategies. I hope you will consider participating.
Dr. Ece Bayram is a scientist working at the University of California San Diego, and an active contributor to the LBDA Research Centers of Excellence Network. She is also the recipient of the LBDA New Investigator Pilot Study Award, made possible by your generosity.
To learn more about this topic, you can watch Dr. Bayram’s Lewy Brief here.
- Nelson PT, Schmitt FA, Jicha GA, et al. Association between male gender and cortical Lewy body pathology in large autopsy series. J Neurol 2010;257(11):1875–1881.
- Bayram E, Coughlin DG, Banks SJ, Litvan I. Sex differences for phenotype in pathologically defined dementia with Lewy bodies. J Neurol Neurosurg Psychiatry 2021;92(7):745–750.
- Chiu SY, Wyman-Chick KA, Ferman TJ, et al. Sex differences in dementia with Lewy bodies: Focused review of available evidence and future directions. Parkinsonism Relat Disord 2023;107:105285.
- Gámez-Valero A, Prada-Dacasa P, Santos C, et al. GBA Mutations Are Associated With Earlier Onset and Male Sex in Dementia With Lewy Bodies. Movement Disorders 2016;31(7):1066–1070.
- Gibbons E, Rongve A, de Rojas I, et al. Identification of a sex-specific genetic signature in dementia with Lewy bodies: a meta-analysis of genome-wide association studies. medRxiv 2022;2022.11.22.22282597.
- Boot BP, Orr CF, Ahlskog JE, et al. Risk factors for dementia with Lewy bodies: A case-control study. Neurology 2013;81(9):833–840.
- Gonzalez-Latapi P, Bayram E, Litvan I, Marras C. Cognitive Impairment in Parkinson’s Disease: Epidemiology, Clinical Profile, Protective and Risk Factors. Behavioral Sciences 2021;11(5):74.
- Holden SK, Bedenfield N, Taylor AS, et al. Research Priorities of Individuals and Caregivers with Lewy Body Dementia. Alzheimer Dis Assoc Disord 2023;37(1):50–58.