ABSTRACT
Objectives: Caregivers (CG) of persons with dementia have described positive and challenging experiences related to caring for a person with a neurological disease. This study explored perceived benefits and challenges of a unique psychoeducation program provided at end of life (EOL) jointly attended by current and bereaved CGs of persons with dementia, residing in a hospital Specialized Care Unit.
Method: Semi-structured interviews were held with sixteen participants and analyzed with content analysis.
Results: Program benefits were perceived by CGs such as: (i) enhanced emotional well-being, (ii) increased feelings of preparedness for EOL, and (iii) personal growth into role models. Within the organization the program was perceived as promoting relationship-centered care and increasing resources. Challenges such as diverse CG preferences, day-time scheduling and limited involvement of unit staff were perceived as barriers.
Conclusions: This program fills a gap in care for CGs at the critical stage of EOL with continuity into bereavement. Implications for practice include: increasing engagement of unit staff for involvement and tailoring of the program, and translation of the program into alternative settings like long-term care. Policies outlining the support needs and resources for CGs through EOL within and outside the hospital are necessary to ensure access and continuity of care.
Disclosure statement
The authors report no conflicts of interest.