Enhancing Measurement and Characterization of Roles and Experiences of Sexual and Gender Minority Caregivers of Persons living with Alzheimer's Disease and Related Dementias
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SUMMARY Sexual and gender minorities (SGM), defined here as individuals who identify as lesbian, gay, bisexual, transgender, queer, intersex, asexual, and/or another identity, continue to be underrepresented in Alzheimer’s disease and related dementia (ADRD) caregiving research. Estimates suggest at least 1 in 5 SGM adults in the U.S. (nearly 1 million persons) are currently caregivers, with nearly half providing care to someone with ADRD. Our previous research has found that SGM caregivers experience health disparities, including high levels of caregiver stigma, depression, disability, victimization, discrimination, and stress (e.g., physical, emotional, and financial strain). Given the critical contributions of informal caregivers to ADRD care and the changing nature of caregiver dynamics, roles, and needs, it is crucial that measures relating to caregiving accurately reflect all caregivers. This study proposes to enhance understanding of experiences, roles and dynamics for SGM ADRD caregivers by identifying existing domains and developing new measures, testing and validating these measures, and ensuring measures are inclusive and accurately capture caregiving constructs and experiences of SGM ADRD caregivers. Guided by a community based participatory approach, we will leverage expertise of advisory boards with knowledge of SGM ADRD and caregiving research. This mixed method study has three specific aims. In Aim 1, we will identify and explore domains of ADRD caregiving for SGM ADRD caregivers through focus groups (n=8) and in-depth interviews (n=40). These findings will inform Aim 2 and the identification of key domains and subdomains. In Aim 2, we will develop and refine new measures of ADRD caregiving for SGM ADRD caregivers through the use of a modified online Delphi method that will garner input from advisory boards (community partners/researchers, n=40) with expertise in ADRD caregiving measures and the lived experiences of SGM and non-SGM ADRD caregivers. To ensure content validity of the new ADRD measures, they will be pretested and refined based on initial testing (n=40) and cognitive interviews (n=20) with SGM and non-SGM caregivers. In Aim 3, we will then test the new and existing measures of ADRD caregiving among a heterogeneous sample of SGM (n=250) and non-SGM ADRD caregivers (n=250). After evaluating the dimensionality structure of each item pool for a given domain and removing misfitting items, we will use item response theory (IRT) and an IRT-based model fit to further evaluate for item misfit. Finally, the resulting measures will be evaluated within an independent sample of SGM (n=125) and non-SGM (n=125) caregivers. This study’s iterative process will allow for the development of 6 to 8 new or modified caregiving measures that can help to improve access to supports and services of SGM ADRD caregivers, and ensure that future studies and intervention efforts can meet the needs of all ADRD caregivers and their care recipients.
