Feasibility and acceptability of introducing person-centered narratives in an acute care setting for people with Alzheimer's and Dementia

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Providing appropriate care for persons with dementia (PWD) poses a significant challenge for hospitals and health systems. Hospitals are often disorienting environments, particularly for PWD who can have difficulty expressing themselves and communicating their immediate needs or longer-term goals to physicians, nurses or other hospital providers. Having the life stories of patients with such cognitive impairments in the electronic health record (EHR) may provide an opportunity to improve person-centered care, the foundation of the Alzheimer’s Association’s Dementia Care Practice Recommendations. Brief life stories can allow the care team to see the person beyond their cognitive disabilities and understand the person’s current actions, beliefs, and values. The purpose of this Phase I study is to test the feasibility and acceptability of adapting MemoryWell’s life story solution, originally designed for long-term care settings, in an acute care hospital setting in which brief patient life stories would be incorporated into the hospital EHR. To accomplish this, in partnership with University of California San Francisco Acute Care for Elders (ACE) unit, Aim 1 of this study will take an iterative, participatory-design approach including interviews and surveys of patients, family members, and hospital providers to adapt MemoryWell’s life story interview process and questionnaire for PWD in the acute care hospital setting. Aim 2 will employ a similar iterative, participatory-design approach to co-design a system, story format, and logistics for integrating life stories within the EHR in the acute care setting, as well as a preliminary investigation of best practices for transmitting these stories to post-acute settings. Following this, in Aim 3, 25 stories will be created for PWD admitted to the UCSF ACE unit. Following the implementation of these stories according to protocols established in Aims 1 and 2, eligible patients, family members, and hospital providers will be interviewed and surveyed about their experiences with the life stories to establish the acceptability and feasibility of their incorporation in the ACE setting. Aim 3 will also include analysis of usage data from the UCSF EHR to provide quantitative metrics of life story access across different types of hospital provider users (physicians, nurses, patient care assistants, social workers, chaplains and case managers). To lay the groundwork for a future randomized controlled trial (RCT), Aim 3 participants will also be asked to provide input on potential scales and outcome measures they believe are most appropriate and relevant when using life stories in the acute care hospital setting.