Experiences of African American caregivers providing care for family living with Alzheimer’s disease: A descriptive phenomenological study

Abstract

This study aimed to describe how African American family caregivers of people living with Alzheimer’s disease manage caregiving. A qualitative study design using a descriptive phenomenological approach was used to understand the lived experiences of African American family caregivers. Fifteen individual semi-structured and in-depth interviews were conducted via telephone or videoconference between January and June 2023 to address the research question. Guided by Swanson’s theory of caring, the data transcribed verbatim from the audio-recorded interviews were analyzed using Colaizzi’s methodology. Eight themes emerged from the data: (a) Parenting all over again, (b) Self-sacrifice, (c) Caring for the caregiver, (d) Connecting to God, (e) Responsibility to care, (f) Trapped, (g) Beyond exhaustion, and (h) Loss of self. The findings of the study indicate that African American family caregivers of people living with Alzheimer’s disease often experience physical, mental, and emotional exhaustion while managing care. Thus, there is a considerable need for greater support, health promotion, and development of appropriate interventions to alleviate the challenges experienced so that they can continue in their caregiving role with some respite.