Hospitalizations occur three times as often for persons with dementia (PWDs) as for older adults in general. Prior to hospital discharge, important decisions must be made about the PWD's future care. Although PWDs can provide consistent and reliable information, the process of preparing for future care requires additional cognitive abilities including executive function and insight, which decline in dementia. Hospital providers rely upon family caregivers to advocate for the care values of and make surrogate decisions for the PWD, even when PWDs want to participate in their own care planning. Thus, it is important for family caregivers to be congruent with PWDs regarding their care values in order to make decisions that are aligned with the PWD's preferences for future care. The overall goal of this study is to identify PWD-caregiver dyads most at risk of incongruence while in the midst of a health crisis and looming decisions about future dementia care. A descriptive cross-sectional study of 60 dyads will be conducted in the acute care setting.
The aims of this study are: 1) To identify the modifiable variables associated with incongruence in PWD and caregiver perceptions of the PWD's care values;2) To explore the relationship between incongruence in perceptions of the PWD's care values and the caregiver's preparation for future care. Data will be collected from both the PWD and caregiver. Incongruence will be analyzed at the level of the dyad using multilevel modeling. The relationship between preparation for future care and incongruence in perceptions of the PWD's care values will be examined using multiple regression analysis. This study pertains to NINR's focus on research that promotes decision-making for complex treatment and care options in the face of life-threatening illness, including end-of-life care. In addition, as part of an NRSA proposal, this study contributes to the applicant's long-term goal of developing into an independent nurse researcher who is successful in implementing targeted interventions that improve dementia care planning by balancing the needs of family caregivers and the care values of the PWD. In order to ensure that the applicant has the necessary knowledge and expertise to attain this goal, the training plan draws upon the combined expertise of an interdisciplinary team consisting of researchers who are experts in family caregiving, dementia, analytic methods for dyadic data, and hospitalized patients with cognitive impairment. In collaboration with the applicant, the expert team has developed a comprehensive training plan that includes mastery of content related to dementia care values, expertise in multiple analytic approaches, understanding of intervention research, and dissemination. The research and training outcomes of this proposal are aligned with the goals of the NINR, in that it will support the development of the next generation of nurse scientists, enhance innovation, and contribute to the improvement of the care planning process for PWDs and caregivers.

Public Health Relevance

Hospitalizations occur with disproportionate frequency for persons with dementia (PWDs), and often require the assistance of family caregivers in preparing for post-discharge dementia care. The family caregiver's knowledge of the PWD's care values is necessary to ensure that the PWD is represented while making surrogate decisions that go into a discharge plan;however, evidence from the community setting indicates that family caregivers perceive the care values of the PWD differently than the PWD. This study will provide valuable information about the family caregiver's and PWD's perceptions of the PWD's care values, and enable providers to recognize families who may need additional support in future care planning at a crucial time for the PWD.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Predoctoral Individual National Research Service Award (F31)
Project #
Application #
Study Section
Nursing Science Review Committee (NRRC)
Program Officer
Banks, David
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Oregon Health and Science University
Schools of Nursing
United States
Zip Code
Miller, Lyndsey M; Lee, Christopher S; Whitlatch, Carol J et al. (2018) Involvement of Hospitalized Persons With Dementia in Everyday Decisions: A Dyadic Study. Gerontologist 58:644-653
Miller, Lyndsey M; Whitlatch, Carol J; Lee, Christopher S et al. (2018) Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads. Gerontologist :
Miller, Lyndsey M; Whitlatch, Carol J; Lee, Christopher S et al. (2018) Incongruent perceptions of the care values of hospitalized persons with dementia: a pilot study of patient-family caregiver dyads. Aging Ment Health 22:489-496
Miller, Lyndsey M; Sullivan, Donald R; Lyons, Karen S (2017) Dyadic Perceptions of the Decision Process in Families Living With Lung Cancer. Oncol Nurs Forum 44:108-115
Lyons, Karen S; Miller, Lyndsey M; McCarthy, Michael J (2016) The Roles of Dyadic Appraisal and Coping in Couples With Lung Cancer. J Fam Nurs 22:493-514