Life after caregiving: understanding everyday resilience in the context of the bereavement phase of the caregiver journey
Date
2020
Authors
Seidle, Julie Silver, author
Sample, Pat, advisor
Atler, Karen, committee member
Eakman, Aaron, committee member
Fruhauf, Christine A., committee member
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Abstract
Dementia is a progressive illness that results in cognitive decline for aging adults requiring increased assistance with everyday life as symptoms worsen over time. An illness that is found largely in older adults, dementia rates are rising with the aging population. Dementia often is considered one of the most challenging illnesses for caregivers, given its progressive nature and the individual's subsequent, increased, and complex care needs. Much of the daily care for individuals with dementia is carried out by family members including spouses. Due to the ever-changing complexity of dementia care, spousal dementia caregivers (SDCs) are at an increased risk for negative health and well-being impacts, compared to their non-caregiving cohorts. The caregiving trajectory for SDCs inevitably includes the loss of the spouse, which ushers in one of the most difficult and disruptive role transitions experienced during the life course. The caregiver journey, however, does not necessarily end when the individual with dementia dies, but begins the final bereavement phase of the caregiver journey. This dissertation examines the experience of SDCs and the role of resilience during the bereavement phase of the caregiver journey. I conducted a phenomenological study to increase our understanding of the everyday lived experience of resilience for SDCs during the bereavement phase of the caregiver journey. I also completed a phenomenographical study to capture how SDCs conceptualized their experience during the bereavement phase of the caregiver journey. I offer key takeaways from the studies, then discuss my research approach and recommendations for future research and practice addressing resilience and dementia caregiving. I end this dissertation by situating my work within Occupational Science and Rehabilitation Science.
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Subject
caregiving
occupational therapy
aging
resilience
dementia