Values and Preferences of Individuals With Dementia: Perceptions of Family Caregivers Over Time

Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers' beliefs about care. However, research has yet to address how caregivers' perceptions of IWDs' values and preferences change over time and how change is related to caregivers' well-being. Design and Methods: The sample includes 198 dyads of an individual with mild-to-moderate dementia and a spouse or child providing assistance. Linear growth curve modeling was applied to investigate how caregivers' perceptions of importance of IWDs' values and preferences in daily care change over 4 years and the factors associated with change. Results: Caregivers' perceived importance of IWDs' values and preferences significantly decreased over time, with significant between-person differences in level and slope. Between-person differences in level were associated with caregivers' beliefs about care, IWDs' self-reported importance of values and preferences at baseline, and kin relationship. Changes in caregivers' reports of importance covaried with caregivers' own quality of life over time. Implications: Findings suggest that caregivers increasingly de-emphasize the importance of values held by their IWDs. Although creating this emotional distance may be adaptive, caregivers may become increasingly unable to make decisions that effectively represent IWDs' own preferences.