Caregiving for a Loved One with Dementia at the End of Life: An Emergent Theory of the Basic Social Psychological Process of Rediscovering

Prevalence of dementia is rising across the world, and with it, more and more individuals confront the challenges of caregiving for a loved one with dementia. Caregivers experience burden, depression, and decreased quality of life, which increase as the care recipient approaches the end of life. A classic Glaserian grounded theory methodology was used to discover the basic problem that caregivers of individuals with dementia face at the end of life and how they attempt to resolve that problem. Using the principle of “all is data,” in-person interviews, online interviews, book and blog memoirs of caregivers, and participant observation were theoretically sampled. Substantive and theoretical coding of emergent categories and memo-writing revealed a basic social psychological problem of role entrapment. Caregivers attempt to resolve this problem through a five-stage basic social psychological process of rediscovering. The stages in this process include: 1) missing the past; 2) sacrificing self; 3) yearning for escape; 4) reclaiming identity; and 5) finding joy. By understanding this process, nurses can support caregivers through this journey by validating their feelings in their current stage, preparing them for future stages, and encouraging caregivers in their natural coping strategies as identified in this process. This study provides a substantive theory that may serve as a framework for future studies on caregiving for individuals with dementia at the end of life