Appalachian Home- and Community- Based Services for People Affected by Dementia

Abstract

Purpose: Home- and community-based services (HCBS) have the potential to address the health needs of the rapidly growing population of people with ADRD in Appalachia and their informal caregivers. Little is known about the nature of HCBS and potential barriers to their use in Appalachia. The purpose of this qualitative study was to describe ADRD service providers’ perceptions of the barriers and facilitators to providing high-quality HCBS for people with ADRD and their caregivers in the historically underserved region of Appalachia.

Sample: A qualitative descriptive study was conducted 13 HCBS settings in Tennessee, West Virginia, Virginia, and North Carolina. A standardized, semi-structured guide was used to conduct telephone-based interviews with 13 leaders of HCBS programs. 

Methods: Using qualitative content analysis, two investigators coded interview transcripts, and the full study team used the coded data to identify themes related to HCBS barriers to providing ADRD services and strategies HCBS leaders used to address service delivery challenges.

Findings: Participants held leadership positions in governmental (n=8), non-profit (n=3), and private (n=2) HCBS programs that provided education, service referrals, respite vouchers, support groups, and other services for people with ADRD and their families. Participants described service, cultural, geographic, and funding barriers to community-based ADRD care and strategies to address barriers, including community immersion, mobile HCBS vans, transportation services, and service advocacy.

Conclusions: The findings describe barriers to HCBS in Appalachia extending earlier research with evidence to frame future larger-scaled studies focused on increasing the reach of community-based ADRD care. Future studies are needed to describe larger cohorts of people with ADRD, access to HCBS services, and the relationship between service access and outcomes, such as hospital admission, control of comorbid health conditions, and caregiver self-efficacy. Implementation studies are necessary to examine adaptations of proven ADRD care models for future intervention research.

DOI:  https://doi.org/10.14574/ojrnhc.v26i1.805