CommuniTy Partnerships tO EnGagE UnderrepresenTed Persons witH AlzhEimer's Disease in Dysphagia Research (TOGETHER)
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PROJECT SUMMARY/ABSTRACT Dysphagia frequently develops in patients with Alzheimer’s Disease and Related Dementias (AD/ADRD) and leads to serious health consequences, including increased caregiver burden, malnutrition, pneumonia, decreased quality of life, and mortality. Common treatments for dysphagia in patients with AD/ADRD employ compensatory approaches that do not result in sustained improvements in swallowing physiology and often negatively affect quality of life. There are currently no effective treatments for dysphagia in patients with AD/ADRD that can be practically applied or have lasting effects on the physiology of the swallow. Current recruitment methods for clinical dysphagia research in AD/ADRD predominantly identify patients from outpatient settings or with pre-existing diagnoses, which may create barriers to participation for disadvantaged, individuals who may have limited access to care, lack information about AD/ADRD services, and are more likely to be underdiagnosed. As a result, diverse individuals from disadvantaged backgrounds are disproportionately underrepresented in clinical AD/ADRD and dysphagia research. The long-term goal of Dr. Rogus-Pulia’s research program is to improve the health and quality of life outcomes of persons with AD/ADRD as they relate to dysphagia. The overall objective of this application, an administrative supplement to our parent award R01 1K76AG068590, is to develop reciprocal partnerships with community organizations in Dane and Alachua counties to engage diverse AD/ADRD patients in dysphagia-focused clinical research and to create resources that will facilitate long-term relationships necessary for inclusive future studies. Therefore, we aim to: 1) Develop partnerships with community sites to build infrastructure for recruitment of diverse participants with AD/ADRD and dysphagia. We will use a community-based participatory research (CBPR) framework to build partnerships with community organizations supporting underrepresented groups (Black and Latinx individuals) in Dane County, Wisconsin. As a sub-aim, we will develop a clinical research registry of individuals at these sites with AD/ADRD interested in dysphagia research which will support recruitment efforts for the parent K76 clinical trial. 2) Assess awareness about dysphagia and examine perceived barriers and facilitators to participation in dysphagia-focused research from the perspectives of disadvantaged communities in Dane and Alachua Counties. We will conduct focus groups with 15 Latinx community members in Dane County, Wisconsin as an expansion of Aim 3 of the parent award. Additionally, we will conduct focus groups with 15 Black and Latinx community members from disadvantaged backgrounds in Alachua County, Florida. Results from this qualitative analysis will support future development of a dysphagia research toolbox to support recruitment of underrepresented groups. This supplement will build on the parent award by addressing fundamental barriers to improved inclusion of disadvantaged, underrepresented individuals with AD/ADRD in clinical dysphagia research.
