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In 2019, more than 16 million caregivers in the US provided 18.6 billion hours of unpaid care, with an estimated value of $244 billion, for people with Alzheimer’s disease or other dementias. But the cost of this unpaid care is not only financial.

According to the Alzheimer’s Association, nearly 60 percent of these caregivers rate their emotional stress level as high or very high and almost 40 percent of family caregivers experience depression.

Who are these caregivers? What does it mean to be a family caregiver for someone with Alzheimer’s disease?

Roughly a quarter of the caregivers are millennials, caring for both a family member with dementia and their own children while also working full time.

Associate Professor Joel G. Anderson
Associate Professor Joel G. Anderson

Joel Anderson, associate professor in the University of Tennessee, Knoxville’s College of Nursing, witnessed firsthand the physical and emotional strain caregivers can experience. He watched his grandmother and mother put their own health needs aside as they cared for his great-grandmother, who had dementia. His family experience and his fascination with the brain and how it works became the basis for his research.

“I want to understand, as best I can, what it means to be a family caregiver so I can work to develop family-centered strategies to reduce caregiver strain and improve quality of life for the caregiver and their family member with dementia,” said Anderson.

In a recent study funded by the National Institute on Aging, Anderson collected data about the experiences of LGBTQ+ caregivers of people with dementia, using social media to engage the caregivers.

Although Anderson is still in the analysis stage of this study, he is intrigued with the widespread use of social media as a support mechanism for caregivers of people with dementia.

“The social media space is one in which caregivers are building communities of support, sharing information, and advocating for their needs and those of people with dementia,” he said.

In addition to his own research, Anderson has played an integral role in leading the Gerontology Research and Scholarship group, known as GeRAS, within the college. Established in 2019, this interdisciplinary group of students and faculty from colleges and departments across campus serves as an intellectual home for those interested in aging and gerontology.

“The GeRAS group has been involved in several collaborative projects, with presentations and manuscripts of our findings in preparation,” said Anderson. “The goal is for GeRAS to continue its collaborative efforts and generate new ideas involving Alzheimer’s disease and dementia–related scholarship.”

Anderson works with community partners including the Knox County Office of Aging, the local chapter of the Alzheimer’s Association, Care Around the Block, and the Pat Summitt Foundation.

“The goal of my work is to improve the quality of life for families living with Alzheimer’s disease and dementia,” he said. “If my work in any way makes that possible, either through a community presentation or a publication that changes the direction of the research, then I have succeeded.”

Anderson’s work has been featured on WUOT.

To get involved with GeRAS, contact Anderson at jande147@utk.edu.

CONTACT:

Diane Carr (865-974-7603, dcarr9@utk.edu)