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A University of Washington study offers the first federally funded research study examining ways to improve the health and quality of life for LGBTQ+ seniors with memory loss.
Aging with Pride: IDEA (Innovations in Dementia Empowerment and Action), a study by the University of Washington, is taking a new approach to older adults and their health care needs—and participants never even need to leave their homes. The research study tests a tailored approach to improve physical function and independence, addressing the unique needs of LGBTQ+ seniors who frequently experience stigma, isolation, and negative interactions with health care providers.
The study is supported by a five-year grant from the National Institutes of Health and the National
Institute on Aging. The principal investigators are Karen Fredriksen Goldsen, PhD from the University of Washington School of Social Work, and Linda Teri, PhD from the University of Washington School of Nursing. The study is open nationwide. Amy Cunningham, MS, Research Coordinator for the study, answered some questions about why this study is so important.
“Alzheimer’s disease and other dementias affect up to 5.7 million Americans, yet we are only beginning to understand their impact in underserved communities,” says Amy Cunningham, MS, Research Coordinator for the study. “The study documents that nearly 40 percent of LGBTQ+ older adult participants reported moderate cognitive challenges, which were associated with their experiences of marginalization and social isolation. LGBTQ+ adults with memory loss and other cognitive challenges face significant barriers to healthcare access and a lack of culturally competent care.”
NHAS found that 10 percent of LGBTQ+ older adult respondents reported severe or extreme cognitive challenges. Given their lifetime experiences of victimization, discrimination, and bias, Cunningham says, many LGBTQ+ seniors forgo seeking needed medical care.
“Fifteen percent of LGBTQ older adults report fear of accessing health care outside the LGBTQ community, and 13 percent—including more than a third of transgender respondents—report having been denied health care or were provided inferior health care due to being perceived as a sexual or gender minority,” Cunningham says. “Thus, many cases of memory loss, including Alzheimer’s disease and other dementias, are likely undiagnosed and untreated in these communities.”
Cunningham says the purpose of IDEA is to focus on problem solving, skill building, and low-impact exercise. The findings of IDEA are designed to help LGBTQ+ people living with dementia and to set the groundwork for other culturally-tailored interventions and policies designed to support LGBTQ+ people in our increasingly culturally diverse and growing older adult population, she says.
“Research studies answer important questions. The IDEA study seeks to improve the health of individuals in the LGBTQ+ community. Individuals can increase their social support and community engagement through participating in studies,” Cunningham says. “This can result in less mental distress and improved quality of life for both the person with memory loss and their care partner.”
A person with memory loss and their care partner participate in the study as a pair, Cunningham says. The care partner can be a spouse, partner, friend, adult child, or anyone who assists the person with memory loss. At least one of them must be LGBTQ+, and the person with memory loss must be fifty years or older. The pair do not need to live together but they must live in the United States.
Participation in the IDEA study is free, and every pair of participants is compensated $25 for each phone assessment completed, with five total assessments over a thirteen-month period. Once all assessments are done, the pair receives $125 total.
“The participant with memory loss and their care partner join an individualized nine-session coaching program. All sessions are done virtually using easy video chatting. Trained coaches teach the pair a set of behavioral strategies, including problem-solving skills, which identify consistent areas of tension while brainstorming ideas and approaches to improve behavioral challenges,” Cunningham explains. “Coaches strategize with the pair to address communication challenges related to memory loss. Coaches also teach a low-impact exercise program including stretching, flexibility, balance, and endurance to strengthen the body, reduce injury, and improve mood.”