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.
Kara Clark Cardwell (865-974-9498, firstname.lastname@example.org)