Spousal caregivers of elderly with dementia: A descriptive study of care theories

Caregivers of individuals with dementia are characterized by high levels of stress, burden, drug use, depression, and physical decline. Caregiving spouses, especially wives are particularly vulnerable to negative consequences of caregiving. Efforts to mitigate these consequences are hampered by poor understanding of how caregivers (1) decide upon and implement daily management plans, (2) interact with health professionals, and (3) interpret their caregiving role. This knowledge gap also compromises the efficacy and cost-effectiveness of services designed to develop caregiving skills for managing the secondary symptoms of dementia. This study, based on a planning theory of human behavior, describes the theories of care by which caregivers decide upon and take action to solve daily management problems. Presented in this dissertation is a descriptive investigation which combines the concepts of caregiver planning processes, gender-related role socialization, and collaboration with a health provider to explore the relationships among three aspects of the caregiving experience, (1) caregivers\u27 theories of care, (2) an intervention designed to develop skills for planning daily management, and (3) gender influences on the caregiving process. Using techniques borrowed from grounded theory, interview and observation data were analyzed to identify the care theories of 26 caregivers who provide care to a spouse with moderate impairment from Alzheimer\u27s disease. This analysis revealed that caregivers develop their preferred care theory by combining principles, or beliefs, about caregiving in an integrated process of assessment, planning and management work. Principles which are commonly grouped together formed a continuum of care theories used by caregivers in this study. That care theory continuum ranged from an emphasis on enabling the care recipient to engage in productive activities, to a focus on managing care by enforcing rules. The type of care theory preferred by each subject was associated with gender of the caregiver and influenced the outcomes of client-therapist interactions in a collaborative therapeutic relationship. Despite methodological issues related to small sample size, important implications for practice, policy, and research are suggested