Category: Research

College of Nursing Faculty Part of $3.5 Million Research Grant

College of Nursing faculty member Joel G. Anderson and colleagues have been granted a research award totaling over $3.5 million from the National Institute on Aging. The grant is a testament to the team’s groundbreaking work and commitment to advancing research in the field of caregiving for people living with dementia.

Anderson, an associate professor known for his exceptional contributions to caregiver support in dementia care, has demonstrated a profound dedication to advancing knowledge in his field. This recent grant award recognizes his leadership and expertise in the pursuit of meaningful research that addresses critical challenges faced by society.

The project, titled “Enhancing Measurement and Characterization of Roles and Experiences of Sexual and Gender Minority Caregivers of Persons living with Alzheimer’s Disease and Related Dementias,” is set to span a five-year period. In collaboration with co-principal investigators Jason Flatt from the University of Nevada-Las Vegas and Maritza Dowling from George Washington University, Anderson and his team will embark on a comprehensive study to understand the experiences, roles, and dynamics of LGBTQIA+ caregivers of people living with dementia.

“We still don’t know a lot about the experiences of LGBTQIA+ caregivers of people living with dementia, so existing measures are unlikely to be sensitive to their unique needs and experiences,” said Anderson. “Some of the critical gaps we aim to address with this study are how current definitions of families can be broadened to better reflect changes to family structures, how different relationship types affect caregiving dynamics, how caregiving and gender roles affect the type of care provided, and how discrimination may represent a barrier for LGBTQIA+ caregivers toward seeking the help and support the need.”

The project aims to identify existing domains and develop new measures that accurately capture caregiving constructs and experiences of LGBTQIA+ caregivers. By testing and validating, the team will ensure these measures are inclusive and effective in portraying the unique challenges and experiences faced by LGBTQIA+ caregivers in the context of dementia care.

Individuals who identify as lesbian, gay, bisexual, transgender, queer, intersex, asexual, and/or other identities remain underrepresented in dementia caregiving research. Estimates suggest that nearly 1 million LGBTQIA+ adults in the U.S. are caregivers, with nearly half providing care to someone living with dementia. Previous research conducted by the team highlighted health disparities experienced by LGBTQIA+ caregivers, such as caregiver stigma, depressive symptoms, and discrimination, necessitating an inclusive approach to caregiving research. The proposed study, guided by a community-based participatory approach, will leverage the expertise of advisory boards and caregiving experts to identify and explore domains of caregiving for LGBTQIA+ caregivers, develop and refine new measures, and test these measures among a diverse sample of caregivers.

Research reported in this press release was supported by the National Institute on Aging of the National Institutes of Health under award number 1R01AG083177-01. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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CONTACT:

Kara Clark (865-9749498, [email protected])

Research Inclusion Supports Equity

Estimates suggest at least one in five (or up to a million) lesbian, gay, bisexual, transgender, queer, intersex, asexual, and/or another identity (LGBTQIA+) adults are currently caregivers, with nearly half providing care to someone with Alzheimer’s disease and related dementias, or ADRD . Yet few studies on ADRD caregiving have examined the unique needs of LGBTQIA+ people living with ADRD and their caregivers, according to Joel Anderson, associate professor in the College of Nursing.

Anderson and his colleagues at Emory University and the University of Nevada-Las Vegas are currently in the second year of their multi-site have received a $2.3 million grant from the National Institutes of Aging to create a national collaborative network and teams that to increase inclusion of older LGBTQIA+ adults in aging research, specifically those living with memory loss or caring for someone with memory loss.

“LGBTQIA+ people more frequently help care for someone living with dementia and are at increased risk of developing dementia themselves. Yet, they remain underrepresented in aging research, which affects the creation of services and supports for this population,” Anderson said.

Called RISE for Research Inclusion Supports Equity, the project launched in 2022. In addition to the lead researchers at UT, Emory, and UNLV, the team also includes experts in aging and caregiving from the University of Wisconsin-Madison, George Washington University, the University of Kansas, and Columbia University. The goals of the ongoing project are to use community-based participatory research methods to establish a research registry of 1,000 plus LGBTQIA+ people with dementia and LGBTQIA+ dementia caregivers. This will be accomplished by developing, implementing, and evaluating tailored recruitment and engagement programs. The project includes a national network of LGBTQIA+ community members, service providers, clinicians, and researchers with expertise in working with LGBTQIA+ people living with dementia and LGBTQIA+ caregivers. This network includes a national advisory board and community advisory boards in Knoxville, Las Vegas, and Atlanta.

“Our national advisory board includes representatives from SAGE (Services and Advocacy for LGBT Elders), AARP, and the Alzheimer’s Association, among others. Our community advisory boards include representatives from local service organizations, such as the Office on Aging and Knox Pride, as well as LGBTQIA+ caregivers,” said Anderson.

Through the RISE registry and the community-focused events, LGBTQIA+ people living with memory loss or caring for someone with memory loss can engage in focus groups and discussions to guide the research, as well as register to be informed of additional research opportunities. Individuals who sign up for the registry will have the opportunity to participate in ADRD research to ensure representation and inclusion in research findings. Additionally, the RISE registry provides LGBTQIA+-supportive resources for adults with memory concerns or for those who serve as caregivers.

Eventually, the team will develop replicable, regionally tailored models for engagement and inclusion of LGBTQIA+ people living with dementia and LGBTQIA+ dementia caregivers in aging-related clinical research. These models will be shared with Alzheimer’s Disease Research Centers, clinicians, researchers and clinical research networks, and community members to engage LGBTQIA+ people in aging research.
“As the population continues to age and diagnoses of ADRD increase, it is imperative that we understand the unique challenges and needs of vulnerable populations to ensure health equity and quality of life,” said Anderson.

More information about RISE can be found on the project website: https://www.theriseregistry.org.

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CONTACT:
Kara Clark Cardwell (865-974-9498, [email protected])

Speaking Up for the Speechless

By Kathleen Christie Photography by Shawn Poynter

“Where does it hurt?”

Such a simple question. Yet many of us struggle to precisely verbalize a description or the extent of our pain. Now imagine how difficult it would be if you had no voice to communicate. Continue reading “Speaking Up for the Speechless”