Unmet Expectations in Alzheimer's Family Caregiving: Interactional Characteristics Associated with Perceived Under-Contribution

Abstract

Background and Objectives Perceptions about family members not contributing enough to caregiving are documented to create psychological stress among caregivers. This study investigated whether individuals' perception that family members are under-contributing in caregiving processes was associated with their psychological well-being and explored the factors that may contribute to such perception borrowing concepts from a previous study: malfeasance, nonfeasance, and uplift. Research Design and Methods Seventy-two members of 30 families recruited through residential and adult daycare settings provided information about 960 familial network members (e.g., family, friends). Perceived levels of participation in caregiving about each network member, whether the level met respondents' expectations, and interactions representing malfeasance, nonfeasance, and uplift were assessed. Results Number of family members respondents identified as under-contributing in caregiving was associated with higher, whereas numbers of family participating in caregiving and supportive staff were associated with lower distress (Center for Epidemiologic Studies Depression Scale [CES-D]). Factor analyses identified a set of social interactions among familial network members capturing three constructs: malfeasance, nonfeasance, and uplift. Network members for whom respondents reported higher levels of nonfeasance were more likely to be identified as under-contributing in direct care (odds ratio [OR] = 1.92), care decision making (OR = 1.89), and social support (OR = 1.74) compared with those identified as contributing enough. Members with higher levels of malfeasance were more likely to be identified as under-contributing in direct care (OR = 1.19) than those identified as contributing enough. Discussion and Implications Social interactions characterized as nonfeasance may explain the perception of unmet expectations in caregiving within families and may represent a potential focus of family-level interventions.