Incongruent perceptions of the care values of hospitalized persons with dementia: a pilot study of patient-family caregiver dyads

ABSTRACT

Objective: Many difficult decisions are made in the inpatient hospital setting regarding the daily care of persons with dementia (PWDs). Incongruent perceptions of the PWD's care values limit the family caregiver's ability to make surrogate decisions. The objectives of this pilot study were to describe and identify determinants of incongruent perceptions in the hospital setting.

Methods: Using multilevel modeling (MLM), we examined cross-sectional data collected from 42 PWD-family caregiver dyads.

Results: There was a significant amount of incongruence, on average, for all four subscales representing the PWD's care values: autonomy = −0.33 (p < .001); burden = −.49 (p < .001); safety/quality of care = −.26 (p < .001); and social interactions = −.21 (p = .004). Family caregivers (CG) rated the importance of care values to the PWD as lower than the PWD rated the importance. Determinants of greater incongruence included higher relationship strain and fewer positive dyadic interactions.

Conclusion: Our findings reveal significant levels of incongruence in perceptions of the PWD's values among dementia care dyads in the hospital setting. Our analysis suggests a potential impact of relationship variables on incongruence. Further research is needed around this overlooked interpersonal context for supporting the dementia care dyad in the hospital setting.

KEYWORDS:

• Incongruence
• interpersonal context
• dyadic
• family caregiving
• hospitalization

Acknowledgments

This work was supported in part by grants from the National Institute of Nursing Research of the National Institutes of Health [F31NR015195; T32NR013456]. Study data were collected and managed using REDCap electronic data capture tools hosted at Oregon Health & Science University, which is supported by a grant from Oregon Clinical and Translational Research Institute [1 UL1 RR024140 01]. The content is solely the responsibilities of the authors and does not necessarily represent the views of the National Institutes of Health. The authors are sincerely grateful to the patients and families who participated, and for the support of nursing staff during the study's recruitment and enrollment. The authors also acknowledge Dr Jill A. Bennett for her contributions to the study development and insightful review of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

National Institute of Nursing Research of the National Institutes of Health [grant number F31NR015195], [grant number T32NR013456]; Oregon Clinical and Translational Research Institute [grant number 1 UL1 RR024140 01].