"It Gets Easier, Not Better": Ambiguous Loss and Resiliency in Adult Children Caring for Their Parent with Alzheimer's Disease

Publication Year:
2018
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Repository URL:
https://repository.upenn.edu/edissertations_sp2/104
Author(s):
Balintona, Maria L.
Tags:
Alzheimer's Disease; Ambiguous loss; Resiliency; Adult Children; Qualitative; Social and Behavioral Sciences; Social Work
thesis / dissertation description
ABSTRACTAMBIGUOUS LOSS AND RESILIENCY IN ADULT CHILDREN CAREGIVING FOR THEIR PARENT WITH ALZHEIMER’S DISEASEMaria Balintona, LCSWRam Cnaan, PhDBackgroundAlzheimer’s Disease is characterized by a decline in cognitive function, memory retention, and thinking skills directly affecting one’s ability to perform activities of daily living. Alzheimer’s disease is fatal, though for many this is its lesser curse. The loss of humanity and the emotional pain of caregiving can be devastating. Today, an estimated 15 million American adults provide uncompensated personal care to their loved ones with Alzheimer’s Disease (Alzheimer’s Association, 2017). As life expectancy increases, the number of elderly are expected to grow and consequently an increase in incidence of Alzheimer’s Disease is anticipated.Alzheimer’s Disease impacts both the individual diagnosed and the family caregivers. Caregivers are profoundly impacted by increasing care requirements as the disease advances. Alzheimer’s Disease (AD) progresses imperceptibly and creates unforeseen challenges to partners, adult children, family systems, loved ones, and friends. Caregivers often face years helping their loved one and experience a multitude of emotional responses ranging from anger to sadness, not to mention the physical and financial strain of the disease on the family system. Often, adult children simultaneously strive to raise their own families, face job-related demands, and limited fiscal resources.With no known cure, this problem has led me to the question of how adult children, providing care for their parent with Alzheimer’s Disease, experience ambiguous loss and resilience.MethodsThis study employed qualitative methods and the outcomes may be used to further enhance our understanding of their experience. Twelve in-depth, semi-structured, face-to-face interviews lasting 60-90 minutes were conducted with adult children who have served as caregivers to their parent.ResultsKey results of the research suggest that feelings of loss change through the disease trajectory and increased social supports are needed early in the disease trajectory to address emotional loss, and adjustments in the shared attachment. Resilience was experienced as increased self-knowledge, self-care, and improved adaptive capabilities. Additional use of social supports and family connections increased resilience in the face of day-to-day care challenges and coordination.DiscussionThis research points to the need to bolster social supports and information for the caregiver when their parent is in the early stages of Alzheimer’s Disease. Increasing social support, self-care strategies, and education early on can mitigate feelings of isolation and ambiguous loss. Limitations include the homogeneity of the participants, different ranges in their parent’s stage of Alzheimer’s disease. Additionally, this study was conducted in a rural area.Keywords: Ambiguous loss, caregiving, Alzheimer’s Disease, adult children, qualitative research, phenomenological theory.