“I’m a Storyteller!”

Abstract

Background:

TimeSlips creative storytelling program is beneficial for persons with dementia and caregivers, but no studies have qualitatively explored participant experience.

Methods:

Ten residents in a skilled nursing care unit participated in 2-hour-long TimeSlips sessions per week, for 6 weeks. Semistructured interviews of participants and staff members were conducted to elicit perceptions of TimeSlips. Thematic analysis was used to evaluate qualitative data.

Results:

There were specific benefits for residents (increased creativity, improved quality of life, positively altered behavior, and involvement in meaningful activity), staff members (learning new practices, developing a deeper understanding of residents, involvement in meaningful activity, and thinking creatively around programmatic challenges), and the nursing home community (nurturing relationships and improved atmosphere).

Conclusion:

Involvement in TimeSlips can engender benefits for residents, staff, and nursing home communities. Future research is needed to quantitatively assess whether the benefits noted in this study can longitudinally improve quality and lower cost of long-term care.

Introduction

Neuropsychiatric symptoms such as aggression, agitation, or psychosis are a frequent complication in persons with dementia (PWD) living in nursing homes. ¹ Few pharmacological options exist for treatment, but atypical antipsychotics are frequently used off-label for these indications. ² In 2005 and 2008, the US Food and Drug Administration issued a warning against the use of atypical antipsychotics for dementia related to increased risk of mortality, ³ and this association has subsequently been observed in large cohort population-based studies. ⁴ A recent study involving more than 26 000 PWD in Norway over a 6-year period demonstrated increased short- and long-term mortality risk with antipsychotic use. ⁵

Given the limitations of antipsychotics and the rising global incidence and cost of dementia, ⁶ the development of effective nonpharmacological interventions has become imperative. These treatments are recommended as the first line of care for management of neuropsychiatric symptoms in dementia before drug therapy is initiated, ³ and evidence-based nonpharmacological treatments to improve care and decrease problems experienced by PWD have been emergent in recent years. ⁷ Within this movement, modalities such as creative expression (CE) programs have been shown to be effective in treating neuropsychiatric symptoms and improving quality of life for PWD ⁸ while reducing symptoms such as apathy. ⁹ Group-based CE programs engage PWD in a supportive environment to produce something new that is of value to self and others. ¹⁰

Creative approaches to dementia care are grounded in theoretical frameworks such as the theory of cognition, which establishes creativity as a core principle of human life across the age continuum. ¹¹ More recent work in the creative aging literature has focused on late-life stages, arguing for a continuing capacity for CE with aging—with particular concern for identifying and supporting these capacities in PWD—and establishing the social, psychological, and neurobiological mechanisms through which participation in creative activities positively affects older individuals. ^12,13 Engagement with creative arts, either as an observer or an initiator of one’s own creative efforts, can enhance moods, emotions, and other psychological states, as well as impact physiological parameters, ^{14 -16} and these biopsychosocial effects are present even for persons who are cognitively impaired. Indeed, for PWD, CE programs are informed by the arts and humanities (eg, story, music, dance, gesture, poetry, visual imagery, etc), which opens multiple avenues for communication and relationship building, provides a supportive and failure-free environment, and enables individuals to produce something new that is of value to self and others. ¹⁰ As the person-centered care and culture change movements have argued, ¹⁷ meeting the basic and higher human needs of PWD is essential, and this requires an appreciation for the continued capacity to learn, think, feel, and express that is present even for persons in the throes of advanced dementia.

In this exploratory study, we examined a CE program called TimeSlips, a group storytelling initiative developed in the 1990s for use with persons affected by mid- and late-stage dementia and now used across the world. ¹⁸ Unlike traditional reminiscence therapies that evoke biographical details to capture a sense of who a PWD was in the past, TimeSlips elicits improvisational performance of self in the present moment. A staged picture is distributed and facilitators encourage input from all group members as a collective narrative is formed. Responses are woven into a story that is read back to the group periodically, creating a sense of community interaction, creativity, and self-worth. Thus, even in the face of the memory loss and disorientation that affect participants, TimeSlips aims at supporting the inherent dignity of PWD by creating a valued social role and focusing on remaining strengths rather than deficits and loss. ¹⁹

A small evidence base suggests that participation in TimeSlips benefits PWD as well as their professional caregivers. Researchers have found that PWD who engaged in a 6-week session of TimeSlips experienced greater positive affect than those receiving a control intervention. ²⁰ A study has also found that facilities that integrated TimeSlips into their care services over 10 weeks reported more frequent staff-resident interactions and social engagement while also nurturing more positive staff views of residents than control facilities. ¹⁰ It has also been observed that participation in TimeSlips improved pre–post attitudes of medical students toward PWD. ²¹ However, no studies have qualitatively evaluated participants in TimeSlips to examine the specific mechanisms through which the activity may provide benefit for PWD and their professional caregivers. Historically, the assessment of the subjective well-being of PWD has been minimized due to logistical, conceptual, and practical issues ¹⁶ and the long-standing bias that PWD are unfit to rate their own quality of life. ^22,23 This study used qualitative methods to address this gap in the literature and explore the subjective experience of residents and staff of a skilled-nursing dementia special care unit who participated in TimeSlips.

Methods

Design

This study was undertaken as part of a cluster-randomized pilot study that compared 2 discrete dementia care units in 1 nursing home to examine whether 1 unit’s involvement in TimeSlips would reduce mood and behavioral symptoms as well as psychotropic medication use in residents. ²⁴ The control cohort (N = 10) received standard-of-care activity programming, and the intervention cohort (N = 10) received standard-of-care plus two 1-hour TimeSlips sessions per week for 6 weeks. Data on mood and behavioral symptoms and psychotropic drug prescriptions were collected, and within-group and between-group comparisons were performed. After the intervention, researchers conducted one-on-one, semistructured interviews with residents and staff members exclusively from the unit that received TimeSlips to explore subjective experiences with the program.

Study Site

The study was conducted in the skilled-nursing dementia special care units of Landis Homes, a nonprofit continuing care retirement community in Lancaster, Pennsylvania. The site has 2 discrete dementia care nursing units, each with 13 residents. One unit participated in the qualitative research described in this article.

Recruitment

Eligibility was based on residence in 1 of the study site’s 2 dementia care nursing units, a physician-documented diagnosis of dementia, and age older than 60 years. Mini-Mental State Examination (MMSE) scores were used to determine capability of providing consent for participation: for those with a score of 23 or lower, the patient’s legally authorized representative (LAR) was contacted for consent. All eligible residents had MMSE scores lower than 23, so recruitment packets were sent to the LAR and followed up by a telephone conversation with the Principal Investigator (PI) explaining the research for informed consent. There were 26 residents eligible for participation in this study; informed consent was obtained for 20 participants, 10 in each unit. A randomization program was used to select the intervention cohort that participated in the TimeSlips sessions. Further qualitative study was conducted only with the intervention cohort. Staff members on the intervention unit facilitated TimeSlips sessions and were asked to participate in interviews after the intervention. Those who provided qualitative feedback at the end of the study were given a Summary Explanation of Research for implied/verbal consent.

Participants

The intervention cohort included 10 caucasian women and no men, with a mean age of 85.5 years (standard deviation [SD] = 6.33) and a mean MMSE score of 6.1 (SD = 7.09). Eight resident participants provided verbal feedback in interviews. Six staff members participated in interviews and came from nursing/direct care, housekeeping, activities/life enrichment, and chaplaincy disciplines. No incentives were offered for resident or staff participants.

Intervention

TimeSlips is a group-based storytelling program that encourages PWD to draw on creativity and imagination rather than memory or fact. Facilitators distribute staged, surreal pictures (eg, an elephant sitting next to a girl on a park bench) to a small group of PWD and use open-ended questions in reference to the pictures to initiate storytelling and encourage participants to exercise their imaginations. All verbalizations (even unintelligible noises and gestures) are validated and incorporated by a scribe into a free-form poem, making the activity collective and “failure free.” Responses are woven into a story that is read back to the group periodically, creating a sense of community interaction, creativity, and self-worth. This free-flowing process lacks formal structure (beginning, middle, and end), and the result is often a whimsical story that amuses participants while also containing idiosyncratic details from their lives. Facilitators commonly collate participant stories in booklet form and give these archived resources back to participants so they have a record of their communal effort—an act that also reinforces that participants have control and agency. The PI was trained by a certified TimeSlips practitioner and facilitated each 1-hour TimeSlips session twice per week for 6 weeks during June and July 2011. All participating staff on the intervention unit were given an hour-long TimeSlips training by the PI before the study, and all were involved in the TimeSlips process with residents during storytelling sessions, taking turns serving as facilitators, storytellers, and scribes.

Ethical Approval

Approval for all aspects of the study was obtained from the Penn State College of Medicine Institutional Review Board and Human Subjects Protection Office (#36459) and the LH Ethics Committee. Written consent from a LAR was required for all participants.

Data Collection

The PI conducted semistructured qualitative interviews during the final week of the TimeSlips intervention to elicit reflections on the program from participants (see Table 1 for elaboration of interview format). Interviews lasted, on average, 15 to 20 minutes with staff members and 3 to 5 minutes with residents. Interviews with residents were held immediately following the final 2 TimeSlips sessions, and the length was shortened for residents to reduce participant burden, support shorter attention spans, and minimize frustration and confusion. Of the 10 participating residents, 2 were silent/nonverbal during interviews. The interviews were digitally recorded and then transcribed by the PI, with identifiers removed. All data were pooled into a single document.

Table 1.

Semistructured Interview Questions.

Interview questions (residents)

1. How would you describe the storytelling experience you just had?

2. What did you most enjoy about it? Would you want to do it again?

Interview questions (staff members)

1. If you have been present for any of the TimeSlips storytelling sessions, please reflect on the program: what did you like or dislike about it? What surprised you?

2. What have you learned from the TimeSlips program (about the residents, about yourself, about people with dementia in general)?

3. What differences, if any, have you noticed in the residents who participated in the TimeSlips sessions?

4. Have you noticed any changes in the overall “feel” of the house since the TimeSlips program started?

Qualitative Analysis

A thematic analysis approach was employed in the analysis of qualitative data. The final transcript was read multiple times and coded at the end of the study by the first author and an external coder. The coding framework drew on preliminary pilot data and existing TimeSlips research, which had previously established greater positive effect for PWD who participated in TimeSlips ²⁰ as well as more frequent staff–resident interactions and social engagement, and more positive staff views of residents, ¹⁰ as well as emergent themes and structure that developed as the research progressed. The investigators coded independently and compared identified codes through an iterative process. Differences were reconciled by (1) discussion about the meaning of the code until agreement was reached or (2) creation of a new code that captured the content of the statement. An interrater reliability score of 0.9 was established, meaning that both investigators agreed on at least 90% of the codes generated. Codes were then collapsed into thematic categories using the same process, and the investigators identified the most pertinent quotes for each emergent theme.

Results

As reported elsewhere, ²⁴ between-group comparisons did not reveal statistically significant differences in mood and behavioral symptoms, and no differences in psychotropic drug prescriptions were found. With regard to the qualitative component of the study, as reflected in Table 2, the themes that emerged from the qualitative data demonstrated insight into several specific benefits for residents, staff members, and the general nursing home community. Quotations from interviews of staff and residents that appear subsequently have been deidentified.

Table 2.

Qualitative Themes.

Main Themes	Subthemes
Benefits for residents	• Increased creativity
	• Improved quality of life
	• Positively altered behavior
	• Involvement in meaningful activity
Benefits for staff members	• Learning new practices
	• Developing deeper understanding of residents
	• Involvement in meaningful activity
	• Thinking creatively around programmatic challenges
Benefits for the nursing home community	• Nurturing relationships
	• Improved atmosphere

Theme 1: Benefits for Residents

Staff members and residents identified 4 specific benefits for residents who participated in the TimeSlips sessions, namely increased creativity, improved quality of life, positively altered behavior, and involvement in meaningful activity. With regard to creativity, 1 staff member stated, “There seems to be a lot of creative energy,” and a resident commented, “You never know what’s going to come together; the ideas just pop out sometimes. I was wondering what would come out!” In terms of improved quality of life, staff members frequently noted a sense of anticipation, liveliness, laughter, and fun in the residents. As 1 staff member said, “It surprised me how awake and involved people became…just very focused.” Another noted that even nonverbal residents commonly responded to the activity with outward behavioral indicators such as smiles and increased attention.

Many staff members observed altered behaviors in the residents for whom they cared, including more engaging conversations in other settings, increased focus and attention to detail, and increased verbalization. A change was noted in several residents who were described as previously more passive in group activities. One staff member said, “With this, it just seemed like [they] felt comfortable doing it…they really kind of came out of their shell.” One staff member described a resident who routinely chose to stay in her room rather than joining the larger group, “She doesn’t like to be with us too much. And now, since we started TimeSlips, she’s been so close to us…with us, every time.”

One of the more compelling themes emerging from resident interviews was the notion that participants were subjectively aware they were contributing to a meaningful activity as part of a collective group. “I’m a storyteller!” one resident emphatically exclaimed, indicating a valued role connecting self and community. This was also noted by several staff members; as one said, the residents may seem “… kind of self-centered, they kind of focus on their own personal physical complaints or needs, but this got them involved in a common story thread and brought them all together.” Another said, “So many times our activities are kind of childish or mundane…but this gave them something meaningful to do, and it had personal meaning to each of them, and collective meaning to all of us as a group.”

Theme 2: Benefits for Staff Members

Indeed, data strongly indicated that staff members benefited from the TimeSlips program in 4 specific ways: through learning new practices, developing a deeper understanding of the residents, involvement in a meaningful activity, and thinking creatively about programmatic challenges. Staff uniformly described TimeSlips as a unique tool for working with PWD; as 1 worker said, “Pictures can…trigger memory in a way that just verbal communication doesn’t.” Many staff expressed surprise. For instance, 1 staff member said, “I think this has really shown that…they can contribute in meaningful ways,” while another noted, “It pleased me to hear them using intelligent language, because you don’t get that very often.” Yet another surprising effect was that TimeSlips was felt to be a purposeful activity for all members of the staff and not just for the residents. As 1 staff member noted, “Staff…were able to relax and have fun with this and really enjoy this with the residents.” Another expressed, “[We] were a part of the project and engaged, and from different disciplines—housekeeping or nursing or whatever.”

Staff also identified distinct challenges created by TimeSlips—most centering around practical and logistical problems that the activity created on the unit—but ultimately found that this enabled staff to think creatively around these challenges. Occasionally, the creativity and liveliness encouraged by the activity became unwieldy for staff. As 1 staff member reflected: “It’s hard to keep up with what everyone’s saying [during the storytelling] when everybody’s talking at once.” Another wondered if perhaps the stimulation may have caused “a few more behaviors” later in the day. One staff member reflected initial concern about how the program would fit into the rhythm of the unit, but spoke about how the challenges associated with TimeSlips provided the staff with an opportunity to adapt and form greater camaraderie: “You can’t predict how a day is going to be. I was concerned about how we would get [the TimeSlips program] done, but you can see now when we want to do something, we put all together to do it.”

Theme Three: Benefits for the Nursing Home Community

Interestingly, not only did TimeSlips appear to provide benefits for residents and staff members, it also appeared to produce a superordinate benefit for the nursing home community by nurturing relationships and improving the atmosphere of the unit. The nurturing of relationships occurred in multiple directions: resident-to-resident, resident-to-staff, and staff-to-staff. One staff member noted: “It brought the staff and the residents together, not just the residents,” while another stated, “I liked the camaraderie…the way they worked together on the story—what one said kind of helped other people to jump in too.” A resident alluded to the collective atmosphere created by the activity, saying “It’s nice to work together as a group.” Many staff members noted a perceptibly different atmosphere in the unit during the TimeSlips intervention. As 1 staff member observed: “There’s an air of anticipation and excitement when I walk in,” while another commented, “It has given us a community feel that maybe wasn’t there before.” Other staff members identified that the environment felt more relaxed, and residents generally seemed more content in the afternoons following TimeSlips: “I think this was a setting in which [the residents] felt free to converse…it was kind of a family atmosphere, and they seemed comfortable and…actively engaged. [With] TimeSlips there was a different kind of atmosphere, a positive one that I don’t generally see.”

Discussion

Preliminary research on TimeSlips has identified benefits for residents and professional caregivers, but this study is the first to use qualitative methods to clarify exactly how the practice may be beneficial for participants and the nursing home community at large. Creative expression programs such as TimeSlips, by engaging PWDs and professional caregivers in a meaningful, relationship-based activity that focuses on remaining strengths and capacities, can create a valued role for individuals who are too often marginalized by their mental illness. Altering the relational dynamics in a more humanizing way can produce larger benefits for the nursing home community.

As the incidence of dementia rises precipitously worldwide in both developed and developing countries, ²⁵ and as pharmacological approaches continue to provide only modest help (and, in the case of antipsychotics, increased risk of mortality), high-quality long-term care will become urgently demanded by modern health care systems. As an easily replicable, low-resource program, TimeSlips may be a promising nonpharmacological, CE intervention that can help institutions further their commitment to providing effective person- and relationship-centered care. Other CE programs that emerge from the arts and humanities—music, dance, gesture, poetry, visual imagery, and so on—may also engender similar benefits in the context of residential care environments, although outcomes may differ based on whether such programs are offered as individual- or group-based interventions. Generally, rigorous study designs (such as randomized control trials [RCTs]) are needed to establish the efficacy of CE programs. Indeed, given that the RCT component of our study ²⁴ did not reveal statistically significant differences in mood, behavioral symptoms, and psychotropic drug prescriptions for the group receiving TimeSlips, larger trials of longer duration are needed to determine whether involvement in TimeSlips can confirm the qualitative findings in this study and improve quality of life for PWD.

Our results also raise the question of whether the practice of TimeSlips may be similarly efficacious within other patient-care settings for older adults (eg, rehabilitation clinics, home-based care, etc). In future research, investigators who develop programs with other patient populations could apply an educational theory such as transformative learning ²⁶ to a longitudinal study of TimeSlips to see if, and how, the attitudes, beliefs, and emotional reactions of care staff toward their patients shift over time, and if these processes are consistent with those observed in this exploratory study. Transformative learning occurs when individuals critically examine their existing schemas of meaning, reflect on their assumptions and beliefs, and “transform” their perspectives in ways that bring about new modes of understanding and acting in the world. Thus, within patient-care settings that integrate TimeSlips, such inquiry could use qualitative methods to identify changes in care staff at several core levels: the psychological (understanding of the self as a professional), the convictional (revision of belief systems and assumptions about mental illness), and the behavioral (changes in professional practice).

From a quantitative standpoint, future research on TimeSlips could involve larger numbers of care staff and wider ranges of patients from different facilities and/or a control intervention that focuses on a conventional form of therapy. There would be particular value in studies that assess whether nonpharmacological, CE interventions such as TimeSlips can, over time, improve relationships between residents and care staff, reduce the usage of antipsychotic drugs that carry significant risk for PWD, improve quality of life, and lower the cost of long-term care. Stronger evidence for the efficacy of creative engagement programs such as TimeSlips may help persuade public and private funders to invest in nonpharmacological, CE approaches for aging populations. Additionally, given the anecdotal evidence of the efficacy of intergenerational TimeSlips programs ²⁷ and an increasing international focus on developing intergenerational partnerships and activities, ²⁸ it may be worthwhile to explore whether reciprocal benefits may be gained from having mixed age demographics participate in TimeSlips (eg, children with behavioral issues and older persons with memory loss), either in institutional or noninstitutional settings. Generally, it is important to bear in mind that TimeSlips, which engages the apparent human predilection for storytelling, should not simply be regarded as an “intervention” for individuals with memory impairment but rather viewed as a broadly applicable CE exercise.

This exploratory study had several limitations, key among which was a small study population with a gender and racial imbalance that was confined to 1 facility. The intervention also occurred over a relatively short study interval, and narrative interviews with residents were brief, lasting only several minutes on average due to the researchers taking care not to burden participants. This limits the depth of the data. Resident feedback would likely have been more robust if it had been elicited at several points throughout the intervention to allow multiple opportunities for expression of opinions and impressions. It would also be valuable for future studies to provide residents a chance to discuss aspects of the program they may have not enjoyed. Researchers might also consider collecting observational data on nonverbal communication of participants (ie, body language, laughter, gesture, etc).

With regard to interviews with staff, there is the possibility that there was a “demand characteristics” effect in which participants unconsciously changed their interpretations of TimeSlips in order to say what they thought the researchers wanted to hear. However, researchers withheld the study goals from staff members for the duration of the study and minimized researcher–participant contact outside of the TimeSlips sessions. Staff members were forthcoming in identifying the limitations and logistical challenges presented by TimeSlips even as they enumerated its benefits. Even so, future studies might benefit by enabling staff to comment more regularly on their experience of the program.

Our study was further limited in that—other than professional status—no demographic data were collected from staff. It may be valuable for future studies to explore staffing strategies (ie, consideration of professional background, age, gender, etc) that may be most effective in supporting the success of CE interventions such as TimeSlips. Researchers might also explore cultural challenges in implementing the method (ie, gender, socioeconomics, etc). Ultimately, despite the practical challenges in working with individuals affected by neurodegenerative conditions, ²⁹ researchers should continue engaging PWDs in research and maintaining sensitivity to their voices, which can provide important insights into quality of life.