All project elements received institutional review board approval with participants providing written informed consent. A total of 208 unique participants (134 female and 74 males; 98 dyads and 12 healthy controls) enrolled in the program from 2018 to2020, including 34 dyads for dance and 30 dyads for theater. Dyads included 56 spousal/partner, 16 parent/child, 3 friends, 2 professional caregivers, and 1 sibling relationship. Dyad relationships were unknown for participants who began the program prior to 2018. Cognitively healthy controls, added in the 2019-20 season, were not required to participate in dyads. PWD were aged 55-95 years, with 58 having formal ADRD diagnoses. Dates of diagnosis ranged from 1994 to 2018 (M = 2013). CPs were 40-91 years old, and healthy controls were 61-81 years old.
Three parallel programs were implemented in fall 2019 (Figure 1), each offering a social hour before and after every performance. Program evaluation involved pre- and post-season assessments, pre- and post-performance assessments, and post-performance CP telephone interviews.
About 1 month prior to each program season, participants attended an intake session. CPs and PWDs (when able) provided information via survey about the PWD's age, gender, educational attainment, career experiences, hobbies/interests, health, cognitive impairment diagnosis, and medications. Dyads also completed a QOL measure developed by the World Health Organization (WHOQOL-BREF). Cognitive performance for PWDs and healthy controls were measured with the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS), a gold standard in the assessment of cognitive decline for its domain specificity, short duration, and high test-retest reliability through the use of parallel testing forms. The RBANS allows for assessment of both extended and acute domain changes in cognition. In addition to five RBANS index scores, we calculated 12 standardized subtest scores, allowing for a holistic view of cognitive functioning taken from multiple domains of interest. This assessment was administered by trained undergraduate and graduate students. The full RBANS assessment and the WHOQOL-BREF were completed at intake and again approximately 1 month after the performing-arts season concluded.
Assessments were also conducted during the social hour before and after each performance, with follow-up CP telephone interviews one-week post-performance (Supplementary Appendix A). Pre- and post-performance assessments included RBANS (typically one verbal/auditory RBANS subtest paired with one visuomotor subtest) for PWDs and a mood survey for CPs and PWDs. Saliva was also collected from dyads pre-performance. The collection method (passive drool) was noninvasive, and samples were analyzed for changes in telomere length to assess whether B/C-Sharp engagement resulted in physiological changes indicating enhanced wellbeing. Significant research over the past two decades indicates telomere length is a reliable marker of aging, health, and overall risk of mortality. Additionally, researchers have associated shortening telomere length with risk of developing Alzheimer's disease, increased ADRD progression, and susceptibility to chronic health conditions among ADRD CPs. Recent research suggests the collection and analysis of physiological measures (i.e., salivary cortisol) in arts engagement research is feasible, thus we sought to explore the feasibility of collection and analysis of salivary telomere in our study.
Other measures included wearable activity trackers and direct observations. Participants wore Fitbit activity trackers to measure heart rate, activity rate, and sleep patterns before, during, and after attending a performing-arts event. Direct observations were conducted by trained graduate students and recorded in detailed field notes for five events during the 2018-19 season (Supplementary Appendix B). See Table 1 for descriptions of measures, procedures, rationale, key findings, and lessons learned.
Across 2018-2020, key B/C-Sharp elements established its overall success, leading to important findings related to improved dyad QOL as well as implications about community-based psychosocial programming. These included an emphasis on mixed-methods program evaluation, with qualitative data yielding the most valuable information, coordination and collaboration with CPs, and the community-driven nature of this program.
Throughout the program evaluation process, qualitative components (interviews and observations) most successfully engaged participants and generated valuable findings as CPs could actively facilitate these methods with PWDs. Furthermore, social hour/performance observations and CP interviews were often part of the "fun" of B/C-Sharp whereas PWDs found the RBANS stressful, making it harder to incentivize completion. Thus, we obtained qualitative data more easily via enjoyable processes, successfully generating valuable insights into dyads' program experiences.
As the program developed and its complexity increased, it became clear that program success depended upon engaging CPs and showing them the value of participation. Efforts to introduce new evaluation procedures without first consulting CPs could result in implementation challenges, inconsistent data, and less effective programming. When CPs were excited about programming, they engaged with methods more consistently. For example, when feedback highlighted that symphony attendance could be difficult due to the late start times, our team created programming options with matinee (e.g., dance) or shorter performances (e.g., theater). Similarly, the introduction of saliva sampling was embraced by CPs and, in turn, PWDs, as the team made special materials to explain the collection process, its purpose, and why it mattered. Saliva sampling experienced high participation, which we largely attribute to our collaboration with CPs.
From its onset, B/C-Sharp was driven by a strong community-university partnership. Prior to program recruitment, the research team secured ticket donations for season performances from the local symphony, dance troupe, theater troupe, and performing-arts center. Community collaborators assisted with other aspects of the program. A local nonprofit functioned as the financial hub for donations and provided snacks for symphony performances. Other area nonprofits collaborated on recruitment and program enrollment. Ultimately, B/C-Sharp thrived because it was supported by multiple community organizations in addition to the interdisciplinary research team.
While B/C-Sharp had numerous successful components, it was not without challenges, which centered on quantitative data procedures, difficulties enrolling and sustaining participation, and overall program complexity.
The primary quantitative evaluation outcome was cognitive performance as measured by the RBANS. Participants found the RBANS frustrating and long. Additionally, dyads were usually separated during testing (though not in cases of emotional distress or advanced ADRD). To address these challenges, the research team began offering season pre-/post-test data collection events at separate dates/times from program events. While some participants did attend these events, they did not completely solve data collection challenges. Furthermore, participants would sometimes skip testing post-performance or arrive too late for testing pre-performance. As such, RBANS data was often incomplete.
Partway through the program, we sought to introduce activity tracking before, during, and after programming. As cognition and QOL can be improved with additional exercise and sleep quality, we explored what role physiological changes played in program outcome measures. A small number of dyads were invited to wear Fitbits to track movement and sleep quality for approximately 5 days before a program event through approximately 5 days afterward. Through the pilot program, it became clear that using Fitbits would not be feasible. Too many PWDs found the Fitbits distracting or annoying, often removing and losing them. For CPs, remembering to keep Fitbits charged, keeping track of their own Fitbit and their partners', and managing the additional research appointments needed to download Fitbit data was too challenging. Thus, this procedure was abandoned.
Some quantitative data difficulties involved the broader challenge of engaging a difficult-to-reach population. Across B/C-Sharp, missing data became a significant problem as individuals skipped performances, declined to participate in testing due to frustration or fatigue, or dropped out because of ADRD progression or other circumstances. Even for participants who persisted in B/C-Sharp across multiple years, missing data made it difficult to draw meaningful inferences. Program sample sizes were often too small to adequately power the more sophisticated analyses needed to account for the myriad factors that influence changes in cognitive performance or QOL over the duration of a nine-month program.
A final challenge was program complexity. Coordinating multiple community-based programs with different evaluation components could overwhelm participants. Even seemingly simple tasks (like completing intake surveys) often resulted in incomplete data because these procedures interrupted event social time (a key benefit of program participation) and felt less meaningful to CPs. Additionally, the barrage of data collection procedures meant that dyads sometimes picked and chose which they wanted to do at any given event:further complicating the data collection process.
Despite program challenges, we were able to draw upon qualitative data to assess behavioral, sociological, and QOL impacts of B/C-Sharp programming. In total, 47 interviews (symphony:33; dance:12; theater:2) were analyzed, and observational data from five events (October, November 2018; February, March, May 2019) was assessed. We used inductive analysis and visualizations using the NVIVO software program to identify themes (Figure 2). Key benefits included positivity, engagement, social interactions and relationships, and overall improved wellbeing and QOL due to program participation. 2
Dyads used words like "enjoy," "love," "great," "wonderful," and other positive terms like "memorable" and "meaningful" to describe how they felt about the program. For example, a multi-year symphony CP articulated her consistently positive experiences: "[It was] Good. Excellent, always is. I just enjoy the process, I enjoy thinking about it, I enjoy going there, I enjoy whatever degree of socializing can happen. I like it at all!" Feelings of positivity were associated with several program aspects: going out for a special event with a loved one, the performance itself, seeing and interacting with others, and a positive change in mood.
Participants described how B/C-Sharp created a fun, safe space for dyads to have an evening out without overemphasizing the role of dementia in their lives. Direct observations noted a joyful atmosphere during the social hour, with participants smiling and joking. Participants also noted that the research team created a positive atmosphere, welcoming them warmly and making small talk. As a symphony CP described: "It's fun! You never know what's going to happen." Observations noted that researchers used humor to reduce anxiety during cognitive assessments and saliva collection, and many participants described that the saliva collection was fun due to the joking around during collection.
Often dyads were motivated to participate because they had attended performing-arts programs together prior to the challenges of dementia. As one (dance) participant explained: "It does make him happier to do something like this and go back to things he did when he was well. It's a big relief for both of us, because life is really stressful because of his disease. This is a really nice getaway just to see him smile and have a good time. These kinds of things make him very happy."
For many participants, engaging in a social activity was a strong motivation for program participation. A symphony CP explained: "[...] The best part was probably just being out for the evening. I think it's just the socialization and getting to participate in something." Participants described enjoying socializing with others experiencing dementia, interacting with the research team (including student researchers), and connecting with the larger community.
Participation across all programs was associated with improved mood per interview, mood scale, and observational data. As a symphony CP shared: "I just do not know how to explain. I mean she was just in a really more upbeat temperament when I took her home. I think she was a little scared when we first went because it was something she had never done before." Although most CPs described improved mood due to program activities, the research component caused stress for some, because it revealed how PWDs struggled with tasks that previously would have been simple. This was occasionally reflected in mood scales and observations noted a few participants appeared upset about quantitative assessments, typically RBANS. Usually a poor mood did not last, as one symphony CP observed: "... it's almost like she forgot about the testing by the end of [the evening]. She was just amazed about the ability of the musicians [...] She was very impressed at their talent." CPs explained their mood was sometimes lower after the event in anticipation of returning to the daily challenges of living with dementia.
Participant engagement was high for all programs, with only two participants describing low engagement (one symphony PWD and one theater CP). Interview and observational data illustrated how PWDs were more alert during programming than they were with similar activities (e.g., watching a movie). CPs and researcher-observers reported PWDs watching performers intently, clapping hands and/or singing along, commenting about aspects of the performance, looking to other audience members for reactions, reading the program, and reminiscing after the performance. A theater CP explained: "She was fully engaged and engrossed in the play and noticed other people around. She not only engaged with me and also the person seated on her other side [...] she did not know her prior to the performance."
Nearly all CPs said B/C-Sharp improved their relationship with their PWD, with only two CPs noting no changes. Several CPs explained that B/C-Sharp helped them feel more connected with their partner, describing participation as a "date night" and reprieve from caregiving: "Well, these days, we are at a point where I am definitely the caregiver. There were moments where I wasn't in the role, which was nice [...] it felt like an actual partnership" (symphony CP). Many CPs described holding hands during the performance and reminiscing together afterwards.
B/C-Sharp also helped dyads create new relationships and allowed them to reconnect with acquaintances. Many CPs described becoming more isolated after their partner began exhibiting dementia symptoms, whereas B/C-Sharp helped them feel like a part of the community. A dance CP explained "It's hard:we are not a couple anymore like we used to be, so people do not include us anymore in those types of activities sometimes." Nearly all CPs described joy in connecting with others through the program. Observational data underscored dyads' interactions, including conversations about the challenges of dementia and around shared interests, hobbies, etc. As a dance CP described: "It wasn't what we were expecting. We enjoyed getting out and being among other people. We both enjoyed it."
Many CPs described their surprise at what their partner could recall about B/C-Sharp events and how much they discussed their experiences together: "Memory:he kept bringing it up. We talked about it all the way home, and the next day, he brought it up without even having the program in front of him. He brought it up without me mentioning it and said how great it was and what a different performance it was" (dance CP).
Many CPs noted that B/C-Sharp renewed their interest in activities they used to do prior to their partner's ADRD. A dance CP shared that he appreciated how the program changed their routine: "[...] It's just a great way to spend an afternoon, otherwise we would have just watched a football game on television, or she would have taken a nap." Several participants explained that B/C-Sharp gave them confidence to do more activities, and a few noted that it helped them understand the importance of staying active: "[...] One of the things I learned the last year is how important it is to stay in the world. If something comes around, we do it" (symphony CP).
In addition to documenting B/C-Sharp's effects on wellbeing, we sought to understand the role of the program's enriched environments (visually, auditorily, and socially stimulating settings). Analysis of observational and interview data revealed three themes: setting afforded social interactions, learning, and arts engagement; setting facilitated positivity and escapism; and spatial configuration created some challenges.
The pre-performance social setting afforded opportunities for social connection. Observations noted that lines formed at the entrance to the event space as participants greeted researchers and each other. The refreshments and community table were hubs for social activities, enabling new participants to easily join conversations. Observers noted that participants moved between tables, forming and reforming small groups. Notably, observers did not record participants engaged in solitary activities (like browsing their phone) during social hours. Interviews also underscored the importance of the social space for connecting with others, as some CPs noted that socialization was more difficult on the few occasions where participants outnumbered the available seating.
The event space layout also enabled communication between participants and researchers, facilitating informal learning. The ticket and saliva collection tables were located near the front of the room, with researchers stationed at those tables engaging with participants and within earshot of those at the refreshment area. Participants shared that they felt comfortable chatting with both faculty and student researchers. Observations noted many participant-researcher conversations sharing research findings and available community resources.
Data revealed the role of others in the audience as a part of the B/C-Sharp experience. Observers recorded how participants would visually connect with other audience members during performances as a form of nonverbal communication, validating their emotional experience. They also chatted with study participants and other patrons during intermission and after the event, "checking in" to see if they had similar reactions. Many CPs cited this type of interaction as a program benefit and described how their PWDs initiated conversations about the performance with strangers, something they did not typically do.
Observers noted the social atmosphere started out calm, with increased energy as the performance approached. Before walking to the performance, participants clustered together, talking in excited tones. This atmosphere of building anticipation created an engaging experience, with some specifically noting that in their interviews. During performances, participants were observed responding with emotion appropriate to the performance, including excitement (clapping, singing, etc.), surprise (raising eyebrows and looking around at others), and calm/relaxation (closing eyes). Observers noted that PWD showed signs of high engagement during performances and looked to other patrons to gauge their responses.
In interviews, CPs sometimes described issues related to physical obstacles. The most significant involved transportation and parking challenges. Some participants relied on a "Dial-a-Ride" service and were frustrated that they had to leave early to meet their pick-up window or were anxious that they might miss a ride. For those who drove, the number and location of parking spaces was difficult, as significant walking was required to get between parking, the social event space, and the performance space. Distance to the restrooms was also a challenge. Another common issue was the number and location of wheelchair seating in the performance halls. On a few occasions, CPs were unable to sit with their PWD who needed to remain in a wheelchair. The third significant theme related to challenges had to do with the timing of performances (mainly in the evening), with concerns their PWD would get tired or be at risk of "sunsetting behavior" that would not be conducive to enjoying an evening out.