Improving End-of-Life Care for Persons Living With Dementia: Bereaved Caregivers’ Observations and Recommendations

• Published in: Journal of pain and symptom management 2021-09, Vol.62 (3), p.579-586
• Main Authors: Yeh, Jarmin C., Newman, Jeff, Main, Rachel, Hunt, Lauren J.
• Format: Article
• Language: English
• Subjects: Alzheimer's disease; Bereavement; Caregivers; Continuity of care; Coordination; Death & dying; Dementia; dementia caregiving; End of life decisions; end-of-life care; Health care; Hospice care; Medical diagnosis; Multiple choice; Palliative care; Polls & surveys; Social support
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2021.01.133

Dementia is a terminal diagnosis that requires significant caregiving support across the trajectory of decline through to death. Experiences and perspectives from bereaved caregivers can help identify ways to improve the end-of-life care experience of persons dying with dementia. This exploratory study sought to assess satisfaction with, and elicit recommendations for improving end-of-life care experiences of decedents with dementia from the perspective of bereaved caregivers. A cross-sectional survey was conducted with caregivers of decedents with dementia (n = 53), from the San Francisco Bay Area, California. Multiple choice and open-ended questions were asked regarding end-of-life care discussions and decisions and respecting and honoring end-of-life needs and wishes. The Satisfaction with Care at the End of Life in Dementia instrument was adapted for the survey. While approximately 75% of caregivers were satisfied with their person living with dementia's (PLWD) end-of-life care, 25% felt better care was needed. Qualitative findings revealed that gaps persist regarding communication with providers about disease progression, care continuity and coordination, and honoring death in a preferred location. While most caregivers felt ready to discuss end-of-life decisions with providers when their PLWD was near death, with retrospection, the majority would recommend that providers discuss end-of-life decisions with them during earlier stages of the disease. End-of-life care for PLWD has significant room for improvement. Efforts to train healthcare providers should focus on helping them meet the complex informational, emotional, and social support needs of PLWD and their caregivers across the trajectory of decline.