Purpose: The purpose of this study was to develop a theoretical model to explain the caregiving trajectories from mild cognitive impairment to severe dementia for spousal caregivers. Methods: A longitudinal, grounded theory approach using secondary data analysis from two primary datasets were carried out. The primary datasets contained 52 face-to-face interviews with 21 spouse caregivers and 6 family members of persons with cognitive impairment. Constant comparative analysis was used to analyze the transcripts and field notes. Results: A new core category “unfolding awareness” became evident from the spousal caregivers interactive process of caregiving trajectories from mild cognitive impairment to severe dementia. This core category included three components: differential circumstances, care attribution and taking perspective. Four aspects of unfolding awareness during the caregiving trajectories emerged: (1) unfolding illness awareness; (2) unfolding caregiving awareness; (3) unfolding couple receptivity; and (4) unfolding prognosis expectation awareness. The unfolding awareness was influenced by interactive factors including personal characteristics, course of the illness and time awareness. These factors can be viewed as barriers or facilitators that influence the speed, changes and initiation of the unfolding awareness. Through the constant evolving interactive process of unfolding awareness between spousal caregiver and persons with cognitive impairment/dementia, they finally arrived at the state of mutual benefit, disruption or compromise. This study found that in a more apparent circumstance, the spousal caregivers was more able to develop empathy toward the needs of the older persons, take the mutual sharing perspective and commit to the caregiving responsibility and to continuously develop unfolding awareness until arrived at the state of mutual benefit.
Conclusions: Result of this study was able to provide a reference for development of individualized, continuous and staging interventions and assessment instruments to spousal caregivers of persons with dementia/cognitive impairment at different stage of illness trajectory. This study might be able to provide novel insights by establishing a cultural sensitive theoretical framework to understand the caregiving processes for spousal caregivers.
