Aligning the Realities of Caregivers of Neurodegenerative Disease with the Visit-Associated Logistics (VAL) Framework
Victoria Ngo1, Lauren Moo3, Megan Gately2, Steven Shirk2, Elizabeth Chamberlin2, Jaye McLaren2, Elizabeth (Beth) Marfeo4
1New England Geriatric Research, Education, and Clinical Center (NEGRECC), Department of Veterans Affairs, 2Department of Veterans Affairs, 3VA Bedford Healthcare System, 4Tufts University Department of Community Health
Objective:
To integrate observed caregiver experiences in dementia care within the Visit-Associated Logistics (VAL) framework to identify intervention targets for patients with neurological disorders (ND).
Background:
Caregivers of people with ND face extensive challenges in coordinating medical visits and navigating health system logistics. Our prior studies highlight that clinic encounters for persons with ND (e.g., dementia) are multi-stage processes encompassing preparation, travel, and in-person medical visit experiences. The recently introduced Visit-Associated Logistics (VAL) framework offers six domains—Scheduling, Preparing, Visit-Related Time/Travel, Caregiver Independence, Routine Disruption, and Feelings/Impressions—to systematically characterize these challenges.
Design/Methods:
An online survey of informal caregivers of older Veterans asking about visit coordination challenges and a structured synthesis linking two datasets: qualitative interviews with dementia caregivers describing medical visit experiences and VAL constructs. Themes were coded across visit stages and mapped to VAL domains to generate medical-visit-specific constructs.
Results:
The 27% (137/511) who provided ND caregiving reported poorer QoL (M= 67.1, SD = 13.52 vs. M=70.2, SD=12.78; t(509) = 2.38, p = 0.018), a higher rate of problematic behavior in the care recipient (16.1% vs. 9.6%) prior to attending the visit, and had a higher likelihood of reporting stress during medical visits (35.0% vs. 19.3%) compared to those without ND. Caregiver experiences clustered into VAL-aligned domains: (1) Preparing—anticipatory anxiety and repetitive cueing in persons with dementia; (2) Visit-Related Time/Travel—fatigue, disorientation, and travel barriers leading to missed or shortened visits; (3) Feelings/Impressions—clinic environments and rapid communication pace overwhelmed patients, while caregiver-only discussions enhanced understanding.
Conclusions:
Mapping neurological caregiver experiences to VAL domains reveals concrete targets for neurology clinics: clustered scheduling, pre-visit therapies to reduce anxiety, hybrid or tele-neurology follow-ups, protected caregiver consultations, and timing visits to match dyad routines. Applying VAL to caregiving can reduce caregiver burden, improve visit completion, and enhance continuity for patients with ND.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.