Supporting Caregivers of Persons with Dementia: A Psychoeducation Program at End-of-Life

Abstract

Informal caregivers (CG) of persons with dementia can experience increased negative effects and symptoms of burden as the disease progresses, with long-term effects into bereavement. The purpose of this study was to describe staff and attendees’ perceptions of a unique CG psychoeducation program located in a Specialized Care Unit for persons with advanced dementia at end-of-life. This study used a qualitative descriptive design, which aimed to describe a natural experience. Sixteen individual interviews were conducted with current and bereaved CGs who jointly participated in the program, health care professionals (HCP) in the Specialized Care Unit and social work facilitators to understand experiences, perceived benefits and barriers of the program. Thematic content analysis was conducted with data collection following Hamilton Integrated Research Ethics Board approval. Final results indicate that the program was perceived positively, across all participant groups. Caregivers reported that the program contributed to improved emotional well-being, development of a close community, disease preparedness and empowerment. Participants also appreciated the open-ended, informal format of the program with continuity into bereavement. The study findings support the unique characteristics of this psychoeducation program compared to traditional education / support programs, which are closed to bereaved members and time-limited. This program model is translatable to multiple settings including long-term care. Moreover, study findings highlight the movement towards relationship-centered care for persons with dementia and their CGs. A future mixed-method study is warranted to measure quantitative outcomes, such as complicated grief, within CGs attending the program before and after bereavement.