Does God Work in All Things to the Good of Those Who Love Him? Family Caregivers of Persons with Early-Stage Dementia Share Their Spiritual Struggles

Abstract

Spiritual struggles are distressing thoughts, feelings, or shifts in behaviors pertaining to faith/life philosophy in response to traumatic/stressful experiences. There is limited research on this phenomenon among family caregivers of persons in the early-stages of dementia (PWD). The purpose of this qualitative study, therefore, was to better understand spiritual struggles in this population. Using Interpretative Phenomenological Analysis, we analyzed interviews of 28 caregivers of PWD in the early stages. There were three broad areas for spiritual struggles in their narratives: (1) transpersonal spiritual struggles (e.g., struggles with God or a higher power in the context of caregiving); (2) interpersonal spiritual struggles (e.g., struggles with communities of faith related to the lived experience of being a caregiver of a loved one with dementia); and (3) intrapersonal spiritual struggles (e.g., struggles around beliefs, morality or ultimate meaning related to caregiving). Themes and subthemes under each of these areas are expounded upon. The importance of identifying/addressing spiritual struggles among family caregivers of PWD and areas for future research are highlighted.

Keywords

• dementia
• caregiving
• spiritual
• religious
• faith
• coping