Multi-State Implementation of the Alzheimer's Association Dementia Care Coordination (DCC) Program

The Alzheimer's Association partnered with health systems in Illinois, Greater Missouri, and Washington to implement and evaluate the Knight Family dementia care coordination (DCC) program, a novel telephone-based care coordination service that bridged the gap between clinical care and community support. Healthcare providers were trained to systematically identify dementia caregivers and refer them to Alzheimer's Association care consultants who provided personalized education, resources, and support. This innovative model addressed critical care coordination gaps in dementia care delivery.

A mixed-methods process evaluation assessed DCC implementation and caregiver outcomes. Caregivers completed validated surveys at baseline and follow-up, including the PROMIS Self-Efficacy for Managing Emotions scale and the general self-efficacy scale (GSE). Surveys also captured action plan uptake, resource utilization, and barriers to implementation. Health system employees completed surveys and structured interviews about program satisfaction and workflow integration. The Consolidated Framework for Implementation Research (CFIR) and the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, and Maintenance) guided identification of barriers, facilitators, and implementation outcomes.

Caregiver self-efficacy scores were mixed: approximately 44%-45% improved on the self-efficacy scales at follow-up, while a nearly equal proportion (42%-44%) worsened. Mean PROMIS scores showed no significant change (all p > 0.4), and mean GSE scores declined slightly but significantly at 3 months. Although improvements in self-efficacy were not consistently observed, caregivers demonstrated high program engagement: 70% completed action steps, 80% utilized community resources, and 90% demonstrated comprehension of their individualized action plans. Health system employees reported high program satisfaction, though clinician engagement remained a barrier.

This multi-state evaluation demonstrates the feasibility of implementing a telephone-based dementia care coordination program across diverse health systems and highlighted strong caregiver engagement with program resources. However, self-efficacy outcomes did not show consistent improvement. Controlled trials are needed to determine which caregivers benefit most and whether more intensive or targeted interventions are required.