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

Abstract

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 1-7 hours/weekly had less pain, fewer pressure ulcers, less dyspnea and fewer hospital transfers compared to residents who had no visits or who were visited > 7 hours/week. After adjusting for covariates, residents who were visited >7 hour/week had more pressure ulcers, more pain, greater dyspnea, fewer DNH orders, and lower HCP satisfaction with care compared with residents who were visited 1-7 hours/week.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 promote worse quality of care, or whether worse quality of care promotes greater family oversight.

Sources of Stress for Family Members of Nursing Home Residents With Advanced Dementia

“…Our finding that family members expressed a belief that visitation and vigilance were needed in order to ensure adequate resident care may shed light on prior findings from the CASCADE study which indicate that lack of family member visitation was associated with lower quality care. 24 This work also found that very high levels of visitation were associated with lower quality care, which may reflect the family members’ perceived need for greater oversight.…”

Pårørende en betinget ressurs? En kvalitativ studie av pårørende til langtidsbeboere i sykehjem sine erfaringer av egen rolle

“…Pårørendes involvering er sammensatt av alt fra besøk, sosio-emosjonell støtte, å vaere talsperson, til å gi personlig omsorg (Davies & Nolan, 2006). Pårørende bidrar til å ivareta beboernes livskvalitet, og det kan se ut som pårørendes involvering også er positivt for kvaliteten på pleien i sykehjemmene (Gaugler, 2005;Grabowski & Mitchell, 2009). Samtidig er det studier som viser at pårørende selv har varierende opplevelser av det å bli pårørende til beboere på sykehjem (Berglund, 2007;Førsund, 2009;Haesler, Bauer & Nay, 2010;Hertzberg, Ekman & Axelsson, 2001).…”

Dying with Dementia: What We Know after More than a Decade of Research

“…Other analyses were cross sectional or did not include patients at the end of life (associations with satisfaction with care [115], instrument properties [128], cross sectional associations between grief and depression [120], and associations with family oversight (visiting) [119]). …”

“…Newer and larger prospective studies include multicenter studies in the US (CASCADE; [44,64,95,115,[118][119][120]128]), the Netherlands (DEOLD; [60]), and Italy (EOLO-PSODEC; [108] [F Toscani, personal communication]; Table 1, studies 3, 4 and 6) typically performed after initial retrospective study. Prospective studies vary as to whether they include both patient and family outcome, and some of them have restricted enrollment to advanced dementia due to feasibility and priority issues.…”