"The Long Goodbye": Uncertainty Management in Alzheimer's Caregivers
Caregivers for individuals diagnosed with Alzheimer's disease (AD) shoulder a remarkably complex burden as compared to other caregivers of elderly individuals. For long distance caregivers, geographical separation further compounds the problems experienced by AD caregivers, as they are isolated from family members and support networks. Both on-site and long-distance AD caregivers experience uncertainty; the findings from this study illustrate how AD caregivers manage the uncertainty of the disease and primary care, as well as how uncertainty differs between on-site and long-distance caregivers. AD caregiver (N = 13) interviews were transcribed and qualitatively analyzed using uncertainty management theory as a thematic lens. The analysis revealed that AD caregivers experience overwhelming feelings of burden, guilt, and doubt; however, these feelings manifest differently depending on caregiver type. The findings of this study demonstrate that sources for obtaining information regarding AD and caregiving were useful for on-site caregivers; however, the sources did not account for the needs of long-distance caregivers or the psychosocial needs of on-site caregivers. Furthermore, AD caregivers did not seek support or information about AD and caregiving from health care professionals. Implications for future research regarding long-distance and on-site AD caregiving are discussed.