Author: Benjamin Wright Major: Communication Sciences and Disorders
Benjamin Wright is a senior studying Communication Sciences and Disorders and conducts research on self identity and socially attributed identity in individuals with early-onset dementia under the guidance of Associate Professor Fran Hagstrom.
During the Spring and Fall 2020 semesters at the University of Arkansas, I conducted research in the Department of Rehabilitation, Human Resources, and Communication Disorders underneath the guidance of my advisor, Associate Professor of Communication Sciences and Disorders, Dr. Fran Hagstrom.
The overarching goal of my research was to investigate the ways in which the personal identity of individuals with early-onset dementia (dementia onset before age 65). A review of previous research on early-onset dementia was used to determine the kinds of biographical data that might yield insight into identity for this study. Publicly available video, audio, and text material submitted by individuals with dementia and family members were identified and used data sets for thematic. This data included different textual sources such as How We Die: Reflections on Life’s Final Chapter by Sherwin Nuland & Alzheimer’s from the Inside Out by Dr. Richard Taylor (Ph.D.) and audio-visual sources such as Into the Fog: Living with Early Onset-Alzheimer’s from YouTube. The aforementioned sources were transcribed both line-by-line and in a block format using Microsoft Word and then organized for using a Microsoft Excel File for thematic analysis. Thematic analysis of the data corpus was segmented into a progression of dementia identified by descriptions of symptoms associated with the initial phase of diagnosis; the middle phase when individuals are struggling to maintain everyday life; and the late phase when they are unable to care for themselves. The sets were read twice sets of focused subthemes. The first of these will be read for disease description, behavioral challenges, situational needs, and themes associated with personal identity and quality of life changes. The second reading identified themes focused on attributed self-identity, attributed self-identity of the caregivers, and attributions of identity toward others whether a person experiencing EOD or a partner/family member/caregiver(s). As of the end of the grant period, the collection of data for thematic analysis is still ongoing through the Spring 2021 semester to ensure the validity of current major and minor themes associated with self-identity and socially attributed identity of individuals with early-onset dementia for application in the SLP professional field.
Real world application of Research
Understanding shifts in self-other identity for individuals experiencing early-onset dementia and those who care for and about them provides a foundation for quality-of-life goal setting in palliative care, hospice care, and end of life treatment. My research traces perceived changes in identity as it relates to the disease progression in individuals with early onset dementia. This research is significant because identity is constructed in the action of completing everyday activities, and these are dramatically altered by early onset dementia for patients as the disease dements the mental and physical capabilities of individuals with EOD. Speech Language Pathologists in healthcare are heavily involved in the care of these individuals. With proper education, SLPs can enhance life quality by including identity perspectives in their respective treatment planning as outlined using the Functional Individuals system model for clinical usefulness. Beyond the specific clinical population of individuals with EOD, this research will be compared to other literature in other neurogenic clinical populations in the healthcare system such as individuals with aphasia, right-hemisphere disorders, and other complex neurogenic disorders.
Impact of COVID-19 on Research Conferences
Claire Wood (researching attachment theory & its applications for the caregivers of early onset dementia) and Annabelle Linker (researching late onset dementia self-identity concerning music therapy), along with Professor Hagstrom applied for the ASHA (American Speech-Language-Hearing Association) national conference to be held November 19th-21th in San Diego, California. Unfortunately, ASHA & the city of San Diego decided to cancel the 2020 convention because they determined they would be unable to meet cannot meet the new rules and regulations for mass gatherings in a way that ensures the safety of all participants due to the ongoing COVID-19 pandemic. Seeing as the ASHA Convention has been canceled only once before, in 1943, during World War II, it was not a decision taken lightly. In light of this disappointment, I will seek to present my research through different avenues. The University of Arkansas’s National Students Speech-Language-Hearing Association (NSSLHA) chapter is planning to have an event in April 2021 to present honors research completing in Communication Sciences & Disorders that was unable to be presented in 2020. I also am interested in presenting my research on early onset dementia at other conferences, such as the American Education Association Conference. After the completion of my research, I intend on submitting it to the University of Arkansas Scholar Works.
The Importance of Mentorship
Professor Hagstrom has been insightful as a research advisor in bouncing ideas and providing new views and ways to analyze information for different ideology patterns. Her guidance has been invaluable, especially during the unprecedented COVID-19 pandemic that has pushed each one of us to our limits. I have learned a new research style (qualitative research) and writing style underneath her tutelage. I worked closely with my team members to draft our literature reviews for our respective research. Our team met weekly during the Spring & Fall 2020 semesters with Professor Hagstrom to discuss our findings of the previous week of study, allowing for synthesis and enriching conversation, which has undoubtedly improved our honors projects. Applying to different conferences and grants, making us format our research for other purposes and audiences, has improved the quality and validity of our research. In addition to the weekly group meetings, I met multiple times for one-on-one discussions with Dr. Hagstrom to dive deeper into the research process. From learning how to conduct line-by-line & block transcription on audio-visual sources, troubleshooting the thematic coding process of the aforementioned transcriptions, and refining applications, individual mentorship with Dr. Hagstrom has been an unforgettable experience.
The COVID-19 pandemic has undoubtedly influenced the research process, increased stress, and the need for effective communication, but our team has risen to the occasion. The research team has been unable to meet weekly in person as we had pre-COVID, but still maintained a clear line of communication via email and video conferencing platforms like Zoom and Microsoft Teams despite the abundance of challenges we have experienced. It is certainly not the same experience, but I am grateful to continue my honors experience and continue my relationship with my mentor.
Lessons Learned Through the Honors College Team Grant
Through the Honors College Team Grant, I have embraced my passion for advocating for patient care while honing my organization & communication skills. I have improved at organizing, transcribing, and analyzing different forms of information from YouTube videos, interviews, databases, peer-reviewed literature, etc., and amassing it all into understandable finished products for varying audiences. Perfecting my organization regarding research has generalized into my broader academic & professional life as a future speech-language pathologist. To provide effective care for clients, an efficient organization of information is required. Students often do not fully realize this truth until in the professional field, but the importance of organization has become evident to me earlier because of the organization, time management, and time prioritization required to balance honors research, academics, and social life successfully at the undergraduate level. The organization is the name of the game and I am prepared to play.
During the Fall 2020 semester, as my Honors College Team Grant period drew to an end, Dr. Hagstrom and I decided to seek out another form of grant funding to continue researching individuals with early onset dementia. In mid-October, with the guidance of Dr. Hagstrom, Dr. Mohammad Haghighi, and Dr. Jennie Popp, I submitted a proposal for the Student Undergraduate Research Fellowship (SURF) through the Arkansas Division of Higher Education. I was confirmed as a recipient for the Spring 2021 grant period, securing a $2000 dollar stipend. Without the process of applying for the Honors College Team Grant the previous year, I would have been unprepared for the rigorous application.
Future Plans
In the spring, I plan to continue researching identity in individuals with early onset dementia by comparing my findings with earlier research on early onset dementia as well as literature on other clinical populations, such as regular onset dementia and other adult neurodegenerative clinical populations. This research will be continued to meet the SURF grant requirements and complete the defense my Honors thesis by the end of the Spring 2021 semester. Depending on my graduate school applications’ status, I will be attending a master’s level graduate program to study speech-language pathology with an emphasis on neurogenic communication disorders and swallowing disorders beginning in fall 2021.