In late March, Washington Governor Jay Inslee signed a statewide order to limit the spread of the COVID-19 virus. The Stay Home, Stay Healthy order required every Washingtonian to stay home unless they needed to pursue an essential activity.
For 18 months, Aging with Pride: IDEA (Innovations in Dementia Empowerment and Action) visited participants’ homes to test a tailored approach to improving physical function and independence for aging adults with memory loss and their care partners. At least one of each pair was LGBT. This approach relied upon trained coaches to visit the pair at home to deliver an individualized program of exercise and behavioral strategies in nine one-hour in-home sessions over a six-week period, addressing the distinct risk factors impacting LGBT older adults with memory loss and caregivers.
With the Stay Home, Stay Healthy order, the Aging with Pride: IDEA program can no longer be conducted in participants’ homes. The study’s leadership team made the decision to transition the entire program from in-home to virtual, using easy video chatting. This means that LGBT older adults who frequently experience stigma, isolation, negative interactions with health care providers and/or limited access to support resources can continue to enroll and participate in Aging with Pride: IDEA.
Prior to the roll-out of the virtual IDEA program, enrolled participants were asked if they would be able and willing to use video chatting to meet with their coaches. The answer was a resounding “Yes!” We ensured participants had the necessary equipment and desire to proceed with their sessions virtually.
With the shift to a virtual program, the program is now able to expand and serve a much larger population. Previously offered in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is now available throughout Washington, Oregon, and California.
“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 School of Social Work Professor Karen Fredriksen Goldsen, 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—in part because of the population’s prevalence of depression, cardiovascular disease, HIV, smoking, and social isolation—they remain largely 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 established the foundation for Aging with Pride: IDEA.
Fredriksen Goldsen has led many breakthrough studies, including Aging with Pride: National Health, Aging and Sexuality/Gender Study (NHAS), 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.
According to Fredriksen Goldsen, studies show 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.”