The informal caregiver’s lived experience of being present with a patient who receives a diagnosis of dementia: A phenomenological inquiry

Abstract

This article describes the lived experience of informal caregivers who accompany loved ones as the loved ones receive a diagnosis of dementia. Each of 12 informal caregivers participated in a face-to-face interview that was audiotaped and transcribed. Analysis of the interview text revealed seven constituents as central to the general structure of this experience: (a) having anticipated the diagnosis; (b) feeling relief; (c) feeling the gravitas of the words; (d) grieving the loss; (e) watching for the patient’s reaction; (f) accepting the diagnosis and taking action; and (g) committing to care. Implications for healthcare providers are discussed, with an emphasis on the need to be sensitive to the experience of both patients and informal caregivers when disclosing a diagnosis of dementia.