Perspectives of Caregivers on Early Onset Dementia: An investigation of the role of attachment and shifts in identity
Date of Graduation
Bachelor of Science
Rehabilitation, Human Resources and Communication Disorders
Early onset dementia (EOD) alters the lives of person with dementia (PWD) and caregivers as it broadens from helping with the instrumental activities of daily living to full time assistance with essential activities of daily living. Research literature reports that pre-morbid attachment style continues to be emotionally and behaviorally expressed over the course of dementia; individual and shared narratives contribute to maintenance of personhood and identity; and that maintenance of self and other contributes to quality of life. The purpose of this study was to investigate changes in caregiver perceptions of themselves and their quality of life in the caregiving process as roles and responsibilities shifted across the dementia cycle. Ten open source, archived video, audio, and text materials submitted by partners of individuals living with EOD were used for this study. Bartholomew and Horowitz’s four-category model of attachment and Hagstrom and Daniel’s narrative analysis were used to code and cross code shifting patterns of attachment and identity across dementia stages. Results indicate caregiver strategies become more fluid and flexible to accommodate the inflexibility and unpredictability of the PWD. Securely attached caregivers have a grounded sense of self that moves from reliance to resilience as the scope of caregiving broadens, and they seek ways to maintain the identity of the PWD. Securely attached caregivers experience a higher quality of life and remain aware of the PWD’s quality of life. These results suggest that quality of life for self and the PWD benefit from maintenance of self-identity and attribution of identity to the PWD. The findings have the potential to provide clinicians with a model for goal setting with caregivers and partners with EOD that can advance quality of life for persons – caregiver, patient, family – living with dementia.
Early onset dementia, caregiving, identity, attachment, dementia
Wood, C. (2021). Perspectives of Caregivers on Early Onset Dementia: An investigation of the role of attachment and shifts in identity. Rehabilitation, Human Resources and Communication Disorders Undergraduate Honors Theses Retrieved from https://scholarworks.uark.edu/rhrcuht/72