Predictors of Discrepancy Between Care Recipients With Early-Stage Dementia and Their Caregivers On Perceptions of the Care Recipients' Quality of Life

Purpose: Despite the capability of care recipients (CRs) with early- stage dementia, they are frequently excluded from their own care processes because of stereotypes about their cognitive function, resulting in CR preferences and perceptions being frequently ignored by caregivers (CGs) and health-care providers. Dementia research on CR quality of life (QOL) has typically used CG proxy reports. However, only nine studies have attempted to identify discrepancy between CG and CR about perceptions of CRs with dementia about caregiving. Also, relatively few dementia studies have focused on potential predictors of discrepant perceptions between CGs and CRs of CRs’ QOL. For this study, three primary domains (background characteristics, primary stressor, and secondary strains) in Pearlin’ stress- process model were focused on to explain the variability in CG–CR discrepancy about the CR’s QOL. The goal of this study was to explore predictors of discrepancy between reports of caregivers (CGs) and care recipients (CRs) with early-stage dementia about care recipients’ quality of life (QOL).The aims of the present study were to explore (1) discrepancy between CRs’ and CGs’ perceptions about CRs’ QOL, and (2) potential predictors of discrepancy.

Methods: This study was based on secondary analysis of cross-sectional data drawn from a study of 200 care dyads of CRs with early-stage dementia and their primary family CGs. Functional impairment was measure by 8 item scale. The 15- item decision-making involvement scale assessed CGs’ and CRs’ thoughts about CRs’ decision-making involvement on daily care. The relationship strain was measured by the 4-item scale. CRs’ report of their depressive symptomatology was measured by the 20-item scale. The 13-item QOL scale assessed CG s’ and CRs’ thoughts about CRs’ QOL. CG-CR Discrepancy regarding CR’s QOL was operationalized in two different ways: an absolute discrepancy measure and a categorical direction of discrepancy measure. Paired t-test, and OLS multiple regression (with the absolute discrepancy as outcome) and binary logistic regression (with the direction of the discrepancy as outcome) were used for analyses.

Results: Findings showed that CGs rated CRs’ QOL significantly lower (worse) than CRs did (Aim1). OLS Regression results showed that greater incongruence in perceptions of CRs’ decision-making involvement and higher level of CR impairment in activities of daily living were significantly related to higher discrepancy between CG and CR about CRs’ QOL (Aim2). Using binary logistic regression, this study found that when the dyad had more DMI incongruence, or CG reported higher relationship strain, CG were more likely to report lower CR’s QOL than CR reported (Aim2).

Implications: Practitioners should consider incorporating CRs’ perspective when planning care instead of solely depending on CGs’ perspective. Also, practitioners should pay attention to any gap between perceptions of CGs and CRs, particularly with regard to CRs’ QOL.