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Olivia Dallas (left) and Faith Stagge (right), communication sciences and disorders doctoral students, set up shop outside Quadir鈥檚 Barber Shop in Wilmington as part of a novel, community-based strategy to recruit diverse study participants.
Olivia Dallas (left) and Faith Stagge (right), communication sciences and disorders doctoral students, set up shop outside Quadir鈥檚 Barber Shop in Wilmington as part of a novel, community-based strategy to recruit diverse study participants.

Language unlocks clues

Photos by Evan Krape

Groundbreaking 91原创 study explores whether subtle language changes signal dementia, with community outreach as a cornerstone

When Shena Downs left her nearly 1-year-old daughter with her mother several years ago, she returned home to find her baby without a diaper. It was one of the first signs of her mother鈥檚 forgetfulness. 

Downs鈥 mother was later diagnosed with dementia from Alzheimer鈥檚 disease (AD), which has progressively worsened over the past seven years. 

鈥淚t鈥檚 hard,鈥 Downs said. 鈥淣ow she doesn鈥檛 remember her kids; she walks right by us.鈥 

Downs, who co-owns with her husband in downtown Wilmington, didn鈥檛 hesitate when Roxanne Williams, a community outreach coordinator for the 91原创鈥檚 (RECALL), approached her about her restaurant serving as a critical community outreach point for a study on dementia from AD. 

鈥淓arlier detection could slow disease progression and lead to a longer quality of life,鈥 Downs said. 鈥淚 want to be around for my daughters.鈥

A new approach to earlier detection

Memory loss, as Downs鈥 mother experienced, is often considered one of the earliest signs of AD. However, Alyssa Lanzi, assistant professor of communication sciences and disorders (CSCD) in the College of Health Sciences (CHS) and co-director of the RECALL Lab, believes language could be an even earlier marker.

鈥淚t is not easy to capture mild declines in memory, and research shows that language, including word-finding challenges and the types of words used, may be more sensitive to earlier changes,鈥 Lanzi said.  

Lanzi and , a professor of cognitive psychology at Carnegie Mellon University, have been awarded a $3.7 million RF1 grant from the National Institute on Aging (NIA) within the National Institutes of Health (NIH) to expand and refine DementiaBank, an open-access database of language samples for the study of language as an early behavioral marker of AD. If successful, this research could pave the way for earlier interventions. 

鈥淚dentifying these individuals as early as possible gets them into preventive treatments sooner,鈥 Lanzi said.

The study builds on pilot data gathered by Anna Saylor, a third-year doctoral student in the communication sciences and disorders doctoral program.

鈥淲e know a lot about how language develops in childhood but not much about how it changes in older adults,鈥 Saylor said. 鈥淥ur data suggest subtle language changes might signal future cognitive decline.鈥

Faith Stagge, also a third-year doctoral student in the CSCD doctoral program, is conducting a discourse analysis for people at risk for dementia.  

鈥淲e must learn more about how older adults communicate because we don鈥檛 necessarily know what鈥檚 normal versus not normal,鈥 Stagge said. 鈥淓arly research shows those at risk may repeat more words or pause more, so we need to obtain more data to determine how and if that relates to their cognition.鈥 

A need for better data

To explore these changes on a larger scale, Lanzi is collaborating with MacWhinney, who founded , an open science database for spoken language research. Within TalkBank is , a shared database of multimedia interactions for studying communication in dementia. However, DementiaBank is outdated and limited in demographics, and the quality and rigor of the data need improvement. 

Lanzi is seeking to change that. Her five-year study seeks 300 older adults aged 60-90 nationwide from underrepresented backgrounds or populations vulnerable to health disparities. 

鈥淐urrent DementiaBank data is representative of Caucasians of a higher socioeconomic status,鈥 Lanzi said. 鈥淲e must intentionally recruit people who are at the greatest risk 鈥 for example, adults who are Black, Asian, Hispanic, Latin and those living in rural areas.鈥

Alyssa Lanzi, assistant professor of communication sciences and disorders (CSCD), and CSCD doctoral student Anna Saylor have partnered with local businesses, including inside Hummingbird Island Cuisine in downtown Wilmington, to recruit study participants and build trust.
Alyssa Lanzi, assistant professor of communication sciences and disorders (CSCD), and CSCD doctoral student Anna Saylor have partnered with local businesses, including inside Hummingbird Island Cuisine in downtown Wilmington, to recruit study participants and build trust.

That鈥檚 why you鈥檒l find Lanzi and her team at places in the community like Hummingbird Island Cuisine, Quadir鈥檚 Barber Shop and the YMCA.听

鈥淭hese are trusted places within the community,鈥 Williams said. 鈥淭here鈥檚 a long history of African Americans being told to take something to cure something. When I explain 鈥 this study doesn鈥檛 involve pills, they鈥檙e in.鈥澛

Local business owners see their participation as a way of giving back to the community.听

鈥淢y grandparents have Alzheimer鈥檚,鈥 said Quadir Dawkins, owner of Quadir鈥檚 Barber Shop on North Market Street. 鈥淭his study is a great resource, and I鈥檓 glad we can play a part in helping spread awareness.鈥澛

The recruitment strategy, rooted in community engagement, is part of the novelty of Lanzi鈥檚 grant.听

鈥淭his is a feasibility study to see if our approach in Wilmington can be replicated in other states,鈥 Lanzi said.

Lanzi has also established an advisory committee of nationwide faculty with relevant expertise on specific priority populations. Their input will tailor plans to population needs while data is collected through a central site at 91原创.

The (DECCAR) also provides critical infrastructure for the study.听聽

鈥淭his project is an example of the success of DECCAR, and our impact extends far beyond state lines,鈥 said Lanzi, an executive committee member with DECCAR.听聽

Participants selected for the study will participate in a comprehensive cognitive and language testing battery via telehealth, so they don鈥檛 have to travel to 91原创鈥檚 campus, which is novel and unique to this study.听

鈥淭o study their language, they鈥檒l see pictures and be asked to describe them and share stories from their past,鈥 Lanzi said.听

Study participants will receive a gift card for participating and feedback about their memory to share with their healthcare provider.听

鈥淏uilding trust and giving back are key elements of our strategy,鈥 Lanzi said.

Lanzi is already preparing for the next phase of her research, supported by an additional $800,000 grant from the NIA. This phase will test the effects of an online treatment Lanzi developed for individuals identified as at risk.听

鈥淚f we find that language is an early marker of disease, I want to take this research to the next level and develop treatments that teach strategies to enhance independence and improve the quality of life for those at risk of developing dementia,鈥 she said.

Roxanne Williams, community outreach coordinator for the 91原创鈥檚 Resilient Cognitive Aging Lab (RECALL), talks to people about a study on language and Alzheimer鈥檚 disease as they get their hair cut at Quadir鈥檚 Barber Shop in downtown Wilmington.
Roxanne Williams, community outreach coordinator for the 91原创鈥檚 Resilient Cognitive Aging Lab (RECALL), talks to people about a study on language and Alzheimer鈥檚 disease as they get their hair cut at Quadir鈥檚 Barber Shop in downtown Wilmington.

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