Between 25% and 40% of patients aged ≥65 years have acute or chronic cognitive impairment during a hospitalization, which can greatly affect their experience, care, and ability to communicate [1]. This impairment can be a chronic deteriorating impairment as is seen in Alzheimer or other dementias, or it can be an acute and likely reversible impairment which happens in hospital-induced delirium. For older adults with dementia or at risk of delirium, hospitalizations are often dehumanizing and disorienting [2,3]. No matter if it is a chronic cognitive impairment or an acute delirium episode, it is often difficult for these patients to communicate their needs and preferences in a new environment such as the hospital.

These challenges, coupled with a hospital’s limited set of resources, tools, and time to provide person-centered care can contribute to loss of patient dignity and autonomy [2,4] and result in negative quality and clinical outcomes, including increased restraint use, longer hospital stays, and higher hospital mortality compared to patients without cognitive impairment [1,5-7]. In addition, hospital interdisciplinary care team (IDT) members report feeling moral distress and low satisfaction when they are unable to provide high-quality, person-centered care for patients with dementia and delirium [8]. Care partners for older adults with dementia and delirium experience increased caregiver strain and negative health outcomes from the stress of caregiving [9-13].

Addressing the complexities associated with high-quality, person-centered care for patients with dementia or at risk of delirium requires co-designed solutions that accommodate the workplace demands of the hospital IDTs and prioritize the well-being and individual needs of patients and care partners. Co-design is a dynamic process, endorsed by leading health agencies [14], that involves active engagement of stakeholders in intervention development to produce sustainable, acceptable interventions [15,16].

By acknowledging the unique demands and requirements of multiple clinical roles within the IDT, we can develop interventions that fit into the existing resource-limited care context, resulting in more effective and efficient health care delivery. Engaging IDT members in intervention development can improve their satisfaction and ultimate uptake of the intervention [16]. Co-design has been used to improve the use of electronic information exchange tools (eg, patient portals) by eliciting patient, care partner, care team, and other stakeholders’ perspectives on barriers and facilitators to engagement with these tools [17].

In addition, co-designing with older adults with dementia or at risk of delirium presents an opportunity to understand their needs and wishes [18] but comes with logistical and ethical challenges regarding capacity to consent and participate in research. There is a paucity of research including patients with dementia or at risk of delirium who were hospitalized, in co-design. A recent review identified only 8 published co-design studies in the acute care setting, and none focused specifically on patients with dementia or at risk of delirium [19]. Interviewing the older adults in the presence of their care partner can help with communication [18].

Given the unique barriers to providing person-centered care for older adults facing cognitive issues who were hospitalized, co-designed interventions adapted to this setting and population are sorely needed. Life stories and similar narratives have emerged as a powerful strategy to enhance person-centered care by improving patient–care team relationships and communication. Life stories include information about patients’ values, preferences, and personal experiences that enable the delivery of personalized care aligned with patients’ unique needs. Research on life stories and similar narratives has shown improvements in patient–care team relationships and communication, as well as patient well-being [20-24]. However, life stories have yet to be tailored to the acute care setting for older adult patients with dementia and at risk of delirium.

Because of negative hospital experiences (eg, experiencing confusion and disorientation), communication challenges, and barriers to person-centered care in the hospital, these populations may similarly stand to benefit from patient life storytelling. The aim of this study was to describe a stakeholder-engaged co-design process to adapt an existing life storytelling model for older adults with dementia or at risk of delirium in the acute care hospital setting.

The co-design process involved using a mixed methods data collection approach including in-depth individual interviews and survey.

This study took place in the Acute Care for Elders (ACE) Unit at the University of California San Francisco (UCSF) Medical Center between May and December 2022. The UCSF ACE Unit provides a specialized acute care environment for older adult patients to promote independence and function and prevent complications such as delirium that are common for older adults who are hospitalized [25].

This study was reviewed by the Advarra Institutional Review Board (Pro00056445) and deemed exempt in accordance with the US Department of Health and Human Services regulations at Title 45 Code of Federal Regulations Part 46. Participants provided written informed consent. Patients were able to participate if their legally authorized representative or surrogate provided written informed consent. Participants were remunerated with Visa gift cards for participating; US $20 for surveys and US $50 for qualitative interviews. All data were deidentified before analysis.

MemoryWell life stories, which have been used primarily in long-term care settings since 2017, were developed by expert interviewers (JN-S and MC) with backgrounds in journalism. They developed the life story questionnaire drawing from evidence-based, dementia-friendly interview strategies [26] as well as user experience at long-term care and palliative care settings at 45 sites in more than 20 states. MemoryWell’s life stories have demonstrated improved experiences for patients, care partners, and care staff; in one 30-story pilot at a skilled nursing facility (SNF), patients and family members reported feeling better understood because of the life story, and family members reported improved relationships with care staff [27]. Staff reported increased satisfaction and ability to care for patients considering their needs and wishes after life story intervention [27].

Life stories include information about patients’ life stages (eg, childhood and early adulthood), achievements, challenges, religion and spirituality, favorite activities, and social support. MemoryWell’s life storytelling model consists of a 30- to 45-minute interview conducted by trained interviewers with a patient or their care partner, or both together. The life story interview format is dependent on the patient’s cognitive capacity, care needs, and family preference and availability. When possible, patients participate in all or part of the life story interview independently, and the interviewer can contact their care partner to provide additional information if needed. Otherwise, the interview is conducted with the patient and a care partner present. Questions are addressed to the patient, and the care partner fills in and supports the interview as needed. For patients who are unable to recall or communicate their life stories or whose care needs interfere with the ability to give an interview, a care partner can provide the interview on their behalf. This interview is audio recorded and automatically transcribed. On the basis of this interview, a professional writer writes an approximately 500- to 700-word life story narrative, which takes approximately 1 to 2 hours. The story is then reviewed by an editor for clarity, which takes about half an hour, before being shared with the family and care team. The story is intended to inform care for this particular patient. This study’s goal was to adapt MemoryWell’s SNF life story intervention to the acute care setting for older adults with dementia or at risk of delirium, reflecting setting differences in patient continuity, workflow, and time constraints.

Figure 1 demonstrates our 3-stage co-design process with stakeholders and methods used.

Qualitative interviews (stage 1) were deidentified and professionally transcribed verbatim. We used a combination of qualitative and quantitative content analysis for interview data [32,33]. Transcripts were reviewed independently by 2 members of the research team (SJF and JDH). We first used qualitative content analysis to systematically examine the transcripts to obtain a condensed understanding and description of the content [33]. We used a data-driven (inductive) approach to analysis whereby open coding was performed to identify salient and elevated topics of importance within the data set. Reviewers (SJF and JDH) met to define and refine coding categories to ensure trustworthiness throughout the analysis. Negotiated consensus was used to resolve disparities and coding categories [34]. We then organized codes around key study questions: interest and content, story capture, story sharing and EHR integration, anticipated impact, and facilitators and challenges to implementation. Quantitative content analysis was then performed to count coding categories. This was conducted for the purpose of providing a more detailed assessment of how frequently certain codes or themes were mentioned. Data analysis was managed in Dedoose (SocioCultural Research Consultants, LLC) [35]. Stage 3 surveys were analyzed using descriptive statistics.

Of the 27 individuals interviewed, 3 (11%) were patients, 6 (22%) were care partners, and 18 (67%) were IDT members. Table 1 shows stakeholder interest in life stories and potential topics to include in life stories for patients, care partners, and IDT members. All stakeholders were interested in implementing patient life stories in the acute care setting. Care partners and patients focused on wanting to share who the patient is as a person outside of their current state, including reviewing the patient’s life stages (eg, education, former occupations, and places they have lived) and favorite activities. Several IDT members indicated that while they suspected certain preselected topics could be useful, they would want to know what patients and care partners prefer to share in each story. All IDT members wanted to know about the patient’s social support, as this was deemed to be critical knowledge for tailoring care plans.

Table 3 shows IDT member–reported potential barriers and facilitators to life story implementation. IDT members emphasized the importance of training the full IDT around life stories to ensure life story use by everyone who cares for the patient. They also raised concerns about the time constraints within acute care and the necessity for life stories to be easily accessible. IDT members said that while patients with dementia and delirium could be uniquely well-suited for a life story intervention, care must be taken to adapt to patient capacity, involve care partners when appropriate, and ensure understanding of how information is being shared and with whom.

We partnered with 3 members of the UCSF AER team who provided insights into feasible EHR integration. Moreover, 3 sample wireframes focusing on available functionalities, intended behaviors, and space allocation with prioritization of content were created incorporating options of how the life story would look in the EHR. Figures 2-4 present these wireframes in 3 potential EHR locations, including the Daily Rounds tab (used to quickly collect basic clinical information before rounds), Advance Care Planning (ACP) tab (which summarizes all ACP discussions and documents), and Social History section (the section to input a patient’s social history).

Stage 3 involved asking inpatient IDT stakeholder informants to provide feedback on EHR wireframes and life story implementation, including perceived usability and suggestions for optimizing engagement. Table 4 presents findings from the stakeholder informant survey, where 10 inpatient IDT members were surveyed with a 100% response rate. The Daily Rounds tab was rated highest on convenience of access and satisfaction (out of 10), followed by the Social History and ACP sections, respectively. The Daily Rounds tab was the most common top choice, followed by Social History. The majority (7/10, 70%) of IDT members responded they would review the story for all patients.

This co-design process found that integrating life stories into the acute care setting for patients with dementia or at risk of delirium is a highly acceptable intervention to patients, care partners, and the IDT. Stakeholders were unanimously supportive of the idea of using a life storytelling intervention in acute care. They described potential benefits to integrating life storytelling into acute care including humanizing patients, building patient- and care partner–IDT relationships, sharing information about patients with dementia or at risk of delirium, and addressing potential biases based on age, race, or other factors. Stakeholders described potential challenges including the necessity to focus on acute patient needs, short lengths of stay, the need for IDT member buy-in, and patient capacity and privacy concerns.

The existing MemoryWell life storytelling intervention, previously used in long-term care in the form of 500- to 700-word narratives providing care teams information about patient’s personal histories and preferences, was adapted to meet stakeholder preferences and to best fit the acute care setting needs. These modifications include focusing the life story interview guide to cover stakeholder-selected topics (eg, significant focus on social support), the creation of a brief, bullet point summary to help clinicians quickly learn information most applicable to caring for acute needs and discharge planning, and a multipronged approach to story EHR integration. Stakeholders shared their perspectives on ideal timing for life story interviews, including interviewing the patient as soon as possible while ensuring clinical workflow and medical procedures are not interrupted.

The study resulted in the creation of a co-designed life storytelling interview guide and format for EHR integration and wireframes depicting future EHR integration, and ideas to fit a life storytelling intervention into acute hospital workflows, to be piloted in a future study. A future pilot is needed to explore the actual implementation of the co-designed intervention, including logistics, usability, and impact on the patient, IDT, and care partner outcomes.

This study is the first to our knowledge that has co-designed a life storytelling intervention for patients with dementia and at risk of delirium in the hospital setting. Our findings mirror previous patient narrative interventions aimed at sharing patients’ personal histories, values, and beliefs with their care teams in other clinical settings in terms of acceptability, challenges to implementation, and anticipated benefits. Though some life story work has focused on older adults with dementia, none has focused specifically on those with or at risk of delirium. Life story work has most often been implemented in long-term care settings [24,39-41] and has been acceptable among staff, patients, and care partners [20,21,24,39-41]. Evaluations of the My Life My Story program at the Veterans Administration have found that most staff read narratives [21]. One study involving patients with serious illness and without dementia in acute care found a narrative intervention to be acceptable to patients and bedside nurses [20].

The potential challenges to life story implementation uncovered in this study, including barriers to care team engagement, suitability to the acute care environment, and concerns for patient capacity and privacy are similar to previous studies [20]. One feasibility study of life stories for older adults with dementia in the United Kingdom on acute care National Health Service wards found similar time barriers and a need for prioritizing acute needs [42]. Approaches to the involvement of care partners in storytelling varied by study; some studies caution against using care partners to tell patients’ stories [43], while others acknowledge the need for care partner participation dependent on patients’ cognitive status [24]. We found that to co-design a life storytelling intervention for this population in acute care, care partners must be involved for patients with dementia and those at risk of delirium.

The anticipated benefits in our study are similar to anticipated and actual benefits in previous work, including improving individually tailored care; promoting relationships and communication among patients, care partners, and care teams; and particular benefits for people with dementia or risk of delirium, including serving as a communication tool for patients who are unable to communicate for themselves. Life story studies involving older adults with dementia have also shown that stories humanize patients, improve patient- and care partner–care staff relationships, and aid patient care [42-44].

This study has several limitations. The primary limitation is that it was difficult to recruit and interview patients with dementia or at risk of delirium while they were in the hospital, due to acute illness, consistent clinical interventions, and limited cognitive capacity. Another limitation was the lack of cultural diversity patients recruited, as we were only able to recruit English-speaking patients and care partners. We did allow for English-speaking care partners to participate even if the patient did not speak English, to include perspectives from families with non-English speakers. Our recruitment was limited to 1 unit at 1 hospital and used only the APeX EHR, which means findings may not be generalizable to other EHRs, which could be a barrier to expanding the intervention. Finally, we experienced challenges in recruitment as the ACE Unit beds were delegated to patients who tested positive for COVID-19 of all ages during the study. As the pandemic numbers waxed and waned, this limited the number of available beds for older eligible patients, thus restricting the pool of eligible patients to recruit for our study.

In this study, we have co-designed with patients, care partners, and interdisciplinary team members, an adapted MemoryWell life story intervention for patients with dementia or at risk of delirium in an acute care hospital setting. This study highlights the anticipated impact of life stories for improving person-centered care in this setting, which often has limited resources and tools to do so. Future studies should be conducted to assess implementation feasibility and if these anticipated impacts on quality clinical and person-centered care can be made.