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

Area of Science:

• Gerontology
• Public Health
• Health Services Research

Background:

• Home- and community-based services (HCBS) are crucial for addressing the needs of the growing population with Alzheimer's disease and related dementias (ADRD).
• Appalachia, a historically underserved region, faces unique challenges in providing HCBS for ADRD patients and their informal caregivers.
• Limited understanding exists regarding the specific nature of HCBS and the barriers to their utilization within the Appalachian context.

Purpose of the Study:

• To explore and describe the perceptions of ADRD service providers regarding barriers and facilitators to delivering high-quality HCBS.
• To identify strategies employed by HCBS leaders to overcome challenges in providing care for individuals with ADRD and their families in Appalachia.

Main Methods:

• A qualitative descriptive study was conducted across 13 HCBS settings in Tennessee, West Virginia, Virginia, and North Carolina.
• Telephone-based semi-structured interviews were performed with 13 leaders of HCBS programs.
• Qualitative content analysis was used to identify themes related to barriers and successful strategies in HCBS delivery for ADRD.

Main Results:

• Participants represented governmental, non-profit, and private HCBS programs offering diverse services for ADRD and their families.
• Key barriers identified include service-related, cultural, geographic, and funding challenges.
• Effective strategies to address barriers included community immersion, mobile HCBS units, transportation solutions, and dedicated service advocacy.

Conclusions:

• The study highlights significant barriers to HCBS in Appalachia, contributing evidence to frame future research on expanding community-based ADRD care.
• Further research is needed to investigate larger cohorts, HCBS access, and the impact of service access on outcomes like hospital admissions and caregiver well-being.
• Implementation studies are essential to adapt and test proven ADRD care models for future intervention research.