End-of-Life Care of Assisted Living Residents with Advanced Dementia: Views of Informal Caregivers

TL;DR

This study explores the experiences of informal caregivers providing end-of-life care for assisted living residents with advanced dementia in the U.S.

Contribution

The study provides new insights into informal caregivers' experiences and challenges in end-of-life care for assisted living residents with advanced dementia.

Findings

Most participants observed teamwork among AL staff and hospice workers as important to quality end-of-life care.

Some participants noted a lack of coordination and collaboration among care providers as a major challenge.

Findings suggest a need for better communication and role clarity among caregivers, AL staff, and hospice workers during end-of-life care.

Abstract

Most persons with dementia in the U.S. die in long-term care communities. Assisted living (AL), the fastest growing long-term care option in the U.S., is a primary provider of this end-of-life (EOL) care. To date, little is known regarding the caregiving experiences of informal caregivers (relatives and friends) who are providing care for the growing population of AL residents with advanced dementia at end of life. Using data from interviews with 25 informal caregivers of recently deceased AL residents with advanced dementia enrolled in a 5-year NIA-funded (RF1AG069114/R01AG069114) longitudinal project, this study begins to address this important knowledge gap. Semi-structured interviews were digitally recorded, transcribed verbatim, and analyzed using thematic analysis. Most participants (mean age = 64) were female (88%), Non-Hispanic White (88%), and had some college education or higher (84%). Most residents (96%) were on hospice at the time of their death. Some participants described the “teamwork” they observed among AL staff and hospice workers as important to the quality of EOL care residents received. Others described a lack of coordination and collaboration, including some conflict, among these care providers as their biggest challenge. A need for more communication between informal caregivers, AL staff, and hospice regarding everyone’s role during EOL was noted by some, including concerns about inadequate pain management and insufficient monitoring of vital signs, and other care needs. Findings have important implications for interventions to improve the EOL experience of AL residents with advanced dementia and their care partners.