Decision-making within the social course of dementia: Accounts by Chinese-American caregivers

The goal of this retrospective pilot study was to provide a naturalistic description of the decision-making process regarding dementia, a chronic illness. The hypothesis was that in-depth descriptions by caregivers in a community setting would provide a more comprehensive and realistic representation of decision-making in the case of chronic illness than has been provided by most models. Data were gathered from in-depth, qualitative interviews with seven Chinese-American families living in the Boston area and caring for an elderly family member with dementia. These were supplemented with interviews with medical professionals and ethnography done in the community regarding the care of elders with dementia. Based on the findings, this paper proposes a dynamic, more comprehensive model for the social process of decision-making which is particularly applicable to clinical and life situations of decision-making in the case of chronic illness. The model describes: 1) the decision-maker constellation, including multiple family members, professionals and service systems; 2) relationships between decision-makers as "allies" or "competitors"; 3) variations in the nature of the decision-making process; and 4) the interaction of decision-making with larger social, economic and cultural forces. Decision-making in the case of dementia is placed within the conceptual framework of the "social course" of chronic illness.