Phenomenological Analysis of Hallucinations and Dementia Prevalence in a Residential Care Home Setting at the End of Life

Hallucinations at the end of life are common, yet these experiences are often distressing for patients and caregivers. The goal of this phenomenological study was to retrospectively examine the care records of hospice patients who died while receiving routine home care to better understand the likelihood, nature, and context of recorded hallucinations. A query of hospice intake forms and caregiver narratives for 116 hospice patients who died at a residential care home yielded 48 patients experiencing at least one hallucination. A mixed methods analysis was performed to examine hallucination incidence, dementia diagnosis, time of day of hallucinations, categorization of hallucination types, and thematic interpretation of hallucinations. A large proportion of patients (41.37%) experienced hallucinations at the end-of-life. A chi-square analysis on dementia diagnosis and experience of a hallucination revealed that patients with a dementia diagnosis were no more likely to experience a hallucination than those without dementia. In addition, a paired t-test revealed that hallucinations were no more likely to occur during the day compared to nighttime. Patients experienced a range of hallucination types: auditory (26.1%), visual (22.9%), tactile (12.1%), disorientation/proprioceptive (8.2%), searching (3.1%), and not specified (24.8%). Five main themes emerged from qualitative analyses of patients' hallucination experiences: conversation related, actions, creatures, transportation, perception disorientation, and not specified. These results suggest that hallucinations are common and varied during the home hospice dying experience, and that they can occur at any time of day regardless of dementia diagnosis. Implications for patients and caregivers will be discussed.