Nursing professor receives funding to examine advance care planning decision making and end-of-life care for dementia patients

Zahra Rahemi, associate professor in the Clemson University School of Nursing, has received more than $650,000 in funding from the National Institutes of Health (NIH) to examine the end-of-life decision making processes of caregivers and individuals with Alzheimer’s disease and related dementias (ADRD) across minority populations.

The five-year project will use advanced statistics and explainable artificial intelligence (XAI), along with Health and Retirement Study (HRS) post-mortem proxy interviews and Medicare data, to determine how factors such as social determinents of health and cognitive function complicate decision making processes for individuals with ADRD and influence caregivers’ perception of care.

According to Rahemi, minority populations, such as Black and Hispanic adults, experience higher rates of Alzheimer’s disease and related dementias and lower rates of advance care planning (ACP). She will use secondary data analytic approaches to identify the complex determinents of health that affect end-of-life decision making and care for these populations.

“To improve advance care planning practices for individuals with dementia, we must first understand how individuals and their caregivers perceive the disease and the processes by which they make decisions,” said Rahemi. “Data science on ACP, aging and cognition provides critical insight into the factors that influence decision making and allows us to deepen our understanding of health disparities and barriers to care for people and communities across our state and nation.”

In addition to research, the project will include a professional development component where Rahemi will expand her expertise in ADRD and ACP and receive training in advanced statistical methods, XAI and secondary analysis of large datasets in interdisciplinary aging research.

She will collaborate with a team of researchers and mentors across various disciplines at Clemson University, University of Pennsylvania, Rutgers, University of California San Francisco, University of Michigan and University of South Carolina.

“Dr. Rahemi is leading a critical area of research for patients with ADRD and their families,” said Lesley Ross, professor and SmartState/SmartLife Endowed Chair of Aging and Cognition in the Department of Psychology and director of the Clemson University Institute for Engaged Aging. “Her innovative use of emerging technologies to understand how personal experiences, cognitive function and barriers to care influence patient and caregiver decision making processes will positively improve advance care planning practices for historically underserved populations.”

This project will complement Rahemi’s recent grant from the Alzheimer’s Association to evaluate advance care planning practices between patients, caregivers and physicians. 

The School of Nursing is a part of the College of Behavioral, Social and Health Sciences. Established in July 2016, CBSHS is a 21st-century, land-grant college that combines work in nine disciplines – communication; nursing; parks, recreation and tourism management; political science; psychology; public health sciences; sociology, anthropology and criminal justice – to further its mission of “building people and communities” in South Carolina and beyond.