Home- and Community-Based Service Use and Preferences among Post-9/11 Veterans With or at High Risk of Alzheimer's Disease and Related Dementia and their Caregivers: Protocol for a Mixed Methods Observational Study (Preprint)

BACKGROUND Veterans have an increased risk of developing Alzheimer’s disease/Alzheimer’s disease-related dementia (ADRD) due to military exposures such as traumatic brain injury (TBI). There is a lack of information on home and community-based service (HCBS) use among Veterans who served in the post-9/11 era and their caregivers. OBJECTIVE To (1) quantify HCBS use among post-9/11 Veterans with or at higher risk of ADRD, (2) identify facilitators, barriers, and preferences for HCBS among Veterans and family caregivers, and (3) prioritize HCBS interventions with input from Veterans and family caregivers. METHODS This study will include post-9/11 Veterans with early-onset Alzheimer’s disease or frontotemporal dementia (current ADRD) and Veterans at elevated ADRD risk due to TBI or cognitive dysfunction. Veterans’ family caregivers will also be recruited. Secondary data will come from the Department of Veterans Affairs (VA), the Department of Defense (DOD), and a previous neurotrauma study. Using VA data augmented with Centers for Medicare and Medicaid Services data, we will characterize HCBS utilization. We will calculate the cumulative frequency of use (i.e., number of unique service records) and the proportion of Veterans using a service (i.e., any versus no use) among Veterans with ADRD, and those at higher and lower risk for ADRD. We will compare groups using t-tests for continuous measures (number of services) and chi-square tests for categorical measures (any service use) to test whether Veterans with current ADRD have higher HCBS use. We will interview Veterans and caregivers to identify facilitators and barriers to HCBS use. We will use descriptive content analysis including rich descriptions, coding, and theme identification. We will use a modified Delphi approach to identify and rank HCBS modifications that would increase use. Using the ranking data, we will assess consensus on each item’s importance. If 70% or more respond "important" or "very important", the consensus will be that the item has high importance. Participants for primary data collection will be recruited from prior studies of TBI, military-Veteran caregiver outcomes, VA health systems data, VA clinics, and Veteran- and caregiver-serving organizations. We intend to recruit a diverse sample across sex, race/ethnicity, and rural residence. RESULTS This study was approved by the institutional review boards of the University of Utah, Salt Lake City Veterans Affairs, and UT Health at San Antonio. It was also reviewed by the Human Research Protection Office of the United States Army Medical Research and Development Command. Secondary data use approvals are complete. CONCLUSIONS This study will quantify current HCBS use and identify barriers and needs of Veterans with or at higher risk of ADRD and their caregivers. The results will be used to increase the availability and use of acceptable HCBS for post-9/11 Veterans and their caregivers.