The Aging with Pride: IDEA (Innovations in Dementia Empowerment and Action) study is the first federally-funded research study examining ways to improve the health and quality of life for adults aged 50 and older in the LGBTQ community with memory loss and their caregivers. It tests a tailored approach to improve physical function and independence, addressing the unique needs of LGBTQ older adults who frequently experience stigma, isolation and negative interactions with healthcare 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 UW School of Social Work and Linda Teri, PhD from the UW School of Nursing. The study is currently being held virtually throughout Washington, Oregon and California. Amy Cunningham, Research Coordinator for the study, answered some questions about why this study is so important.
Why is this study aimed at LGBTQ older adults experiencing memory loss?
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. Karen Fredriksen Goldsen leads Aging with Pride: National Health, Aging and Sexuality/Gender Study (NHAS), a national longitudinal study on LGBTQ aging and health, one of the first to document that LGBTQ older adults are at heightened risk of disability due to cognitive or physical impairment and remain severely underserved. The study documents that nearly 40% 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. Caregiving of LGBTQ older adults with memory loss is of concern due to social stigma, marginalization and social isolation, which may be barriers to sustaining caregiving.
Could you talk about the stigma, isolation and negative interactions with healthcare providers LGBTQ older adults frequently face?
NHAS found that 10% of LGBT older adult respondents reported severe or extreme cognitive challenges. Given their lifetime experiences of victimization, discrimination and bias, many LGBTQ older adults forgo seeking needed medical care. Fifteen percent of LGBTQ older adults report fear of accessing health care outside the LGBTQ community, and 13% — 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. Thus, many cases of memory loss, including Alzheimer’s disease and other dementias, are likely undiagnosed and untreated in these communities.
What is the goal of the Aging with Pride: IDEA study?
The program focuses 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.
Why is participating in research studies like this important?
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. This can result in less mental distress and improved quality of life for both the person with memory loss and their care partner.
Who is eligible to participate in the study?
A person with memory loss and their care partner participate in the study as a pair. 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. The person with memory loss must be age 50 years or older. The pair must live in Washington, Oregon or California.
What does someone participating in this study have to do? Does it cost anything to partcipate?
Participating in IDEA is free. We compensate the pair $25 for each phone assessment completed. There are five assessments over a 13-month period. If all five assessments are done, the pair receives $125 total.
What will someone who participates in this study learn?
The participant with memory loss and their care partner join an individualized nine-session coaching program. All sessions are done 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. 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.
Where should someone go if they are interested in participating in the study or learning more?
To learn more about IDEA visit our website at ageidea.org where you can find a short video describing the study. You can also email us at ageIDEA@uw.edu or call us at 1-888-655-6646 for more information.