Pain in Hospice Patients With Dementia: The Informal Caregiver Experience

Introduction: At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia. Methods: We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention. Results: The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering. Discussion: Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.