Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads

Abstract

Background and objectives: Persons with dementia (PWDs) often place greater importance on their care values (i.e., maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g., care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads.

Design and methods: Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis.

Results: Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad.

Implications: Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education.

Keywords: Care Values; Caregiving – Informal; Dementia; Family issues; dyadic analysis.

Figure 1.

Distinct dyadic patterns of perception of the importance of care values to the PWD. PWD = person with dementia; CG = family caregiver; Dashed lines represent average amount of incongruence between perceptions of the PWD’s care values for each pattern: the “Shared Understanding” pattern (n = 173 dyads) and the “CG Underestimating” pattern (n = 55 dyads).