Study Focuses on LGBT Older Adults with Memory Loss

A new evidence-based intervention for lesbian, gay, bisexual, and transgender (LGBT) older adults living with memory loss, including those with Alzheimer’s disease and related dementias, and their informal caregivers was recently awarded a five-year $3.66 million grant from the National Institutes of Health and the National Institute on Aging.

Aging with Pride: IDEA (Innovations in Dementia Empowerment and Action) will be the first to develop and test a tailored approach to improve physical function and independence for LGBT adults with memory loss, who frequently experience stigma, isolation, negative interactions with health care providers, and limited access to support resources.

The study will be based in three west coast cities: Seattle, San Francisco, and Los Angeles. Using trained coaches to deliver an individualized program of exercise and behavioral strategies, Aging with Pride: IDEA will coordinate services with aging and caregiving agencies as well as community organizations in the LGBT community.

In Seattle, the program will be delivered through a collaboration between UW Aging with Pride and GenPRIDE, a nonprofit organization dedicated to providing aging services and programs designed to meet the distinct needs of sexual and gender minority older adults and their families.

Dr. Karen Fredriksen Goldsen

“Unique life experiences of LGBT older adults, including lifetime experiences of discrimination and victimization they may have encountered in health care settings, often result in difficulty accessing services, which can be especially challenging when memory loss and dementia enter the equation,” said Karen Fredriksen Goldsen, a professor in the UW School of Social Work who is the project’s principal investigator.

Alzheimer’s disease and related dementias affect up to 5.7 million Americans. Although LGBT aging adults are at heightened risk for cognitive impairment and dementia because of that population’s prevalence of depression, cardiovascular disease, HIV, smoking, and social isolation, they remain underserved.

The study’s leadership team includes UW School of Nursing Professor Linda Teri, who developed Reducing Disabilities in Alzheimer’s Disease, an earlier study that formed the foundation for Aging with Pride: IDEA.

Fredriksen Goldsen has led other breakthrough studies, including Aging with Pride: National Health, Aging and Sexuality/Gender Study, the first federally-funded national longitudinal study of the health and well-being of LGBT midlife and older adults. It found that 10 percent of LGBT older adult respondents reported severe or extreme cognitive difficulties, and 15 percent were afraid to access health care outside the LGBT community.

Fredriksen Goldsen says research shows that “LGBT older adults with memory loss and their care partners are understudied populations, and our project is designed to aid in the development of much-needed interventions for other vulnerable midlife and older adult populations.”

Anyone interested in the program can contact the project at 1-888-655-6646 or by e-mail at ageIDEA@uw.edu.

The University of Washington Aging with Pride contributed this article. See also “LGBTQ Lack Adequate Access to Housing and Aging Services” in the February 2019 issue of AgeWise King County.