“I Must Be the One to Change; He’s Doing the Best He Can”: Care Partner Evaluation Results from a Four-Part, In-Person, Dementia Community Education Program

TL;DR

A community education program for dementia caregivers improved their knowledge and skills, but highlighted the need for ongoing support and resources.

Contribution

A novel four-part in-person education series for dementia caregivers, evaluated for its impact on knowledge and practices.

Findings

Participants gained knowledge about dementia progression and improved caregiving practices.

Caregivers emphasized the need for ongoing education and emotional support.

Themes like 'assuming responsibility is challenging' and 'I need more help' emerged from evaluations.

Abstract

We created a comprehensive, four-part, in-person, interactive community education series to teach informal, unpaid care partners of persons living with dementia (PLWD) how to support their PLWD, negotiate common day-to-day challenges, and navigate predictable situations that arise as the disease progresses over time. The purpose of this qualitative study was to explore the series impact on participant knowledge, care practices, and perceptions of caregiving. Inspired by the U.S. Medicare Cognitive Assessment and Care Plan Service visit and the 4Ms of the Age-Friendly Health Systems Framework, our curriculum focused on (1) expanding knowledge about the disease and disease progression, (2) developing skills to better connect and work with PLWD, (3) self-care for care partners, and (4) sharing resources to support future planning. The program was delivered in three communities in Central Pennsylvania (one rural, one small, and one medium metropolitan) and was attended by 146 individuals. Both session and final qualitative evaluation data were assessed using thematic analysis and five major categories emerged: lessons learned, activating new knowledge, impact and changes, assuming responsibility is challenging, and I need more help. Ongoing education, emotional support, and access to quality assistance for long-term planning are all needed and require sustained support.

Figures