Date

7-21-2026

Department

School of Behavioral Sciences

Degree

Doctor of Education in Community Care and Counseling (EdD)

Chair

Richard L Green

Keywords

caregivers, Lewy body dementia, caregiver burden, adult children, lived experience

Disciplines

Social and Behavioral Sciences

Abstract

The purpose of this transcendental phenomenological study was to describe the lived experiences of adult children caregivers of a parent with Lewy body dementia (LBD). The study was guided by Pearlin’s stress process model (SPM) and Thibault and Kelley’s social exchange theory (SET), as these theories informed aspects of caregiver burden and stress, as well as caregiver motivation. The study implemented a qualitative design with a transcendental phenomenological approach, exploring caregivers’ subjective individual experiences, while also observing caregivers’ common objective experiences. Data were collected using semi-structured interviews, journal prompts, and cognitive representations, and was analyzed using the Colaizzi open coding method, along with Giorgi’s method. Four major themes and eight subthemes emerged from the data. In theme one, participants reported that caregiving was a mix of challenges and meaningful moments. These consisted of adjusting to the new normal of caregiving, managing distressing LBD symptoms, and experiencing small moments of connection with the care receiver. In theme two, participants reported that caregiving required learning about their parent’s disease and adapting their interventions in symptom management. They also relayed their experiences surrounding their support system and coping methods, as well as inconsistencies in their experience of professional support. In theme three, participants spoke of how their cultural, spiritual, and family dynamics influenced their motivation to provide care. In theme four, participants shared their experience of role reversal and caring for a parent as a child.

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