Family Oversight and the Quality of Nursing Home Care for Residents With Advanced Dementia

Background: The quality of nursing home (NH) care for residents with advanced dementia has been described as suboptimal. One relatively understudied factor in the provision of NH care is the role of private oversight and monitoring by family members and friends. Objective: To examine the association between private oversight and the quality of end-of-life care for NH residents with advanced dementia. Research Design: This Study employed longitudinal data on 323 NH residents with advanced dementia living in 22 Boston area facilities. Using bivariate and multivariate methods, we analyzed the association between visit time by the resident's health care proxy (HCP) and measures of quality of end-of-life care. Results: The relationship between visit time and quality was nonlinear. Residents who were visited 1 to 7 h/wk had less pain, fewer pressure ulcers, less dyspnea, and fewer hospital transfers compared with residents who had no visits or who were visited >7 h/wk. After adjusting for covariates, residents who were visited >7 h/wk had more pressure ulcers, more pain, greater dyspnea, fewer do-not-hospitalize orders, and lower HCP satisfaction with care compared with residents who were visited 1 to 7 h/wk. Conclusions: Several measures of quality of NH care for end-stage dementia exhibit a nonlinear relationship with the degree of HCP oversight, such that no visiting or very high levels of visiting are associated with worse quality. Future research will need to address whether families with greater oversight tend to make decisions that prornote worse quality of care, or whether worse quality of care promotes greater family oversight.