The majority of the estimated 5 million Americans with dementia will be cared for in nursing homes (NH), where they will be at risk of hospitalization for the management of acute illnesses. Hospitalizations in this population are costly, may have limited clinical benefit, increase the likelihood of aggressive interventions, and may result in impaired family member well-being. Although health care proxy (HCP) preferences are a major factor in decisions to transfer NH residents to the hospital, there is a fundamental gap in our understanding of their role in decision-making regarding hospitalizations, their perceptions of the risks and benefits of hospitalization, and how the experience of hospitalization influences advance care planning in the post-hospital period. This study will employ an interdisciplinary research team with expertise in geriatric medicine, geriatric nursing science, qualitative research methods and dementia to explore the experience of HCPs in relation to hospitalization of NH residents with advanced dementia. To achieve this objective, we will recruit a prospective cohort of 50 NH residents with advanced dementia who are either transferred to the hospital, or in whom a decision was made not to hospitalize, and use qualitative methods to examine the following: 1. HCP's participation in the decision whether to hospitalize;2. HCP's perceptions of their own experience and that of the resident during the hospitalization;3. effect of the hospitalization on advance care planning regarding future hospitalizations;and 4. NH providers (nurses and physicians) perception of HCP's role in decisions concerning hospitalization and advance directives. The project will increase our understanding of how to support and engage HCPs to make well-informed decisions regarding hospitalizations of NH residents with advanced dementia.
The majority of the 5 million Americans with dementia will receive care in nursing homes at the end of life and will be at risk of hospitalizations, which are often costly, avoidable, and associated with adverse consequences such as painful procedures, disruption in continuity of care and family member distress. Although family member's preferences are a major factor in decisions to transfer nursing home residents with advanced dementia, we do not currently know enough of how to support families to make better decisions regarding hospitalization or to engage them in advance care planning regarding future hospitalizations. The proposed research is relevant to NIH/NIA's mission to support clinical research on aging.