Keywords

1 Background

Currently, 564,000 Canadians live with dementia. By 2031 it is estimated that this number will increase to 937,000 [1]. Challenges experienced by persons with dementia include difficulties with communication, memory loss, and loss of sense of identity [2].

Digital storytelling can be an effective method for communicating important information because it does not rely on one method for telling the story but provides multiple ways. The visuals, spoken words and music are selected independently but work collectively to impart messages to audiences. Since digital stories are so personal, they not only tell us what happened but also how it happened [3]. Having understood another person’s experience, audiences are then able to relate it to their own narrative through the power of shared archetypal knowledge and wisdom contained in the human psyche [4]. This can make it possible for healthy adults to better understand and connect with the experiences of people with dementia.

A literature review of the use of digital storytelling for persons with dementia indicates that sharing stories has a positive impact on the persons with dementia, their family members and other caregivers [2, 5,6,7,8,9]. The definition of digital storytelling, however, varies in the literature and includes reminiscence therapy, the use of communication assistive devices, and ambient assistive technology. For the purposes of this study, digital storytelling is operationally defined as a form of narrative that creates short movies using simple media technology [10]. Potential for learning and using technology is possible for persons with dementia and is a growing area of research [11, 12].

Specific benefits discussed in the literature for persons with dementia include: improved well-being, increased confidence, communication, connection with others, and a sense of purpose [2, 5,6,7]. Likewise, the use of technology or digital media allows participants to look at or listen to stories repeatedly at their convenience [8]. Storytelling is a way to appreciate the “beauty of the present moment” [9, p. 421] but also to leave a “legacy for families and future generations” [9, p. 425]. Relationships between the participant and care partner, as well as relationships with others show positive changes including deeper conversations [6,7,8], and an increased sense of trust [5].

Currently, technological advances have made it possible for stories to be preserved digitally using multimedia to increase the potential for dissemination as well as improve the likelihood of stories being heard by a broader audience. In addition, the stories may be kept and passed down to loved ones as a legacy.

The purpose of this project was to gain a better understanding of the benefits of storytelling and the use of digital media for persons with dementia. We began with a digital storytelling curriculum developed for the Simon Fraser University Elder’s Digital Storytelling project for older adults [13]. This curriculum was created in September of 2014 using principles gathered from the Center for Digital Storytelling in California (now called StoryCenter), and the Digital Storytelling Cookbook [13].

We have identified some potential benefits from our own past research. The positive outcomes we found in previous digital storytelling workshops with older adults include: empowered participants; assisted social connections among workshop participants, friends, and family; provided a means for legacy creation; increased digital storytelling, technology, and internet skills; provided an opportunity to share stories with others and to learn something new [13, 14]. This study used the core elements of the digital storytelling curriculum because of the positive outcomes generated from the earlier Elder Digital Storytelling project, as well as the potential benefits discussed in the literature.

2 Theoretical Framework

The paradigms that influenced this study included Bruner’s [15] notion of ‘narrative knowing’ and constructivism. In Making Stories, Bruner [15] discusses the etymology of narrative-derived from ‘telling’ and ‘knowing’ in some particular way. Stories are one way of conveying a perspective, an idea, or a certain experience to others, but are also a way to convey the knowledge that comes with the telling. Narrative knowledge provides the storyteller with an understanding of others and themselves through the storytelling process.

Constructivism is based on the notion that there are multiple truths based on perspective and the meanings that individuals place on objects, experiences, and others [16,17,18]. A constructivist paradigm is maintained in this study as the participants share their perspectives through stories of experience. There is a close collaboration between participants and researchers to authentically portray their views and foster understanding of their lives and actions. Hancock and Algozzine [19] note that a case study approach can “capture multiple realities that are not easily quantifiable” (p. 72) and is a way to collect information in natural settings. The case study approach takes individual stories as a way of conveying experiential knowledge and provides a viewpoint that is based on the participant’s understanding of reality [18].

3 Research Questions

  1. 1.

    What is the experience of the digital storytelling workshop for adults with early stage dementia?

  2. 2.

    How does digital storytelling affect their quality of life in terms of relationships and sense of identity?

4 Methods

4.1 Research Team

The researcher team includes six researchers from the University of Alberta, Simon Fraser University, and University of Toronto in Edmonton, Vancouver and Toronto respectively, as well as a care partner consultant in Toronto. Data collection is being staggered over the three sites beginning with Edmonton. Collaborators were all involved in the design of the study, and provided input regarding the digital storytelling workshop and data collection process. The remainder of this paper focuses on the data and findings from the Edmonton site.

4.2 Participants

Eight participants were recruited from the Alzheimer Society in Edmonton. Four males and three females were part of this study. Participants had a diagnosis of dementia and were categorized as being in the early disease stage. All participants lived in the community with a care partner. One participant was unable to complete the digital story due to time constraints (she was leaving on holidays for two months before she finished) but expressed that she would like to participate in the future if there is another opportunity to do so. The other seven participants were able to complete their digital stories. Participants received a copy of their digital stories on a USB key at the end of the study.

4.3 Workshop Details

The digital storytelling workshop took place over seven sessions in six weeks. Participants were involved in the discussion of the workshop and storytelling process and shared about their experience. By providing their perspectives about digital storytelling throughout the process, the participants were able to have a direct impact on the future direction of the project in terms of adaptations and modifications at the subsequent sites in Vancouver and Toronto to improve and enhance the experience of digital storytelling for persons with dementia.

4.4 Workshop Modifications

The Elder’s Digital Storytelling workshop conducted by researchers at Simon Fraser University consists of ten weekly two hour sessions for nine weeks. A tenth week is then scheduled for viewing of the stories by participants, their families and friends. The present study with participants with dementia had shorter, condensed sessions over a span of six weeks. We have shortened the duration of the workshop to minimize any effects related to the progression of dementia on workshop participation.

An initial session included a pre-study interview to gather demographic information, as well as baseline information about a participant’s use of technology, storytelling practices, and other pertinent information. The initial interview included questions to stimulate the discussion of stories from their past and present life. Two sessions involved conversations about stories that were meaningful to the participant. Participants were encouraged to think about which story they would like to develop in more detail. The remaining sessions involved a step-by-step process to create digital stories using a video editing program called WeVideo (https://www.wevideo.com/). After the digital stories were created, the participants had an opportunity to share their stories with a broader audience including friends and family. During the last session, each of the participants talked about their experience of participating in the workshop.

During one of the first sessions, the Standardized Mini Mental Status Examination (SMMSE) was administered to the participants to provide additional information regarding their cognitive state [20]. The SMMSE is a cognitive assessment which can be used to estimate the level of cognitive impairment and dementia severity [21]. The following scores are used to estimate dementia severity out of a total score of 30: 21–25 (mild), 11–20 (moderate), and 0–10 (severe) as outlined in the literature [22]. In this study, the SMMSE was part of the protocol across the three sites.

Another modification made in this study was reducing the number of participants per workshop from 5 to 10 participants [13] down to 2 to 4 participants. This modification was made to give the participants with dementia more individual attention. Care partners were also invited to attend workshop sessions if the participant requested their support. In most sessions the participant did not ask for the care partner to be present.

Last, the sessions were not all carried out as a group, but there was a combination of one-on-one and group sessions. In Edmonton, several of the participants and care partners expressed concerns with getting to and from the workshop site. Likewise, all of them requested to meet in their own home where they felt comfortable. As a result, the researcher and workshop facilitatorFootnote 1 went to their homes for a majority of the sessions.

4.5 Technology

The digital storytelling curriculum required participants to use computers to create their digital stories. The video editing software used, WeVideo, is available for free online. This program includes several features including uploading pictures, adding layers of voice and music recordings, animation, and publishing. The participants were engaged in the entire process, although depending on their abilities, the facilitator worked closely with them. Two participants did not have computers and were unable to use the program without assistance. Other participants were able to navigate the program with help from their care partners. None of the participants were able to use the program independently.

The stories were recorded using a Yeti Blue microphone to enhance the quality of the audio recordings. Six of the participants were able to read the stories they had created. One participant had difficulty reading the story that she had created because of visual impairment. In this case the facilitator read the story and the participant repeated it line by line.

5 Ethics

This study received ethics approval from the University of Alberta (Pro00066310) for the Edmonton site.

6 Data Collection

Data collection occurred across the three sites beginning with Edmonton, and continuing on in Vancouver and then Toronto. Data collection commenced in Edmonton from January, 2017.

The workshop facilitator took field notes, observational notes and audio recorded the workshop sessions as part of data collection. The audio recordings were transcribed and used to clarify and support the field notes on what was said by participants during the workshop. Stake [18] also recommends that observations for a qualitative case study focus on “finding the good moments to reveal the unique complexity of the case” (p. 63). The observational field notes included thick descriptions of the context of the case including the physical environment and the participants [18].

7 Data Analysis

The interview recordings were transcribed by the researchers and coded using NVivo 10 software for analyzing qualitative research. Findings were independently coded by the facilitator in Edmonton with the intention to reanalyze with the researchers from the other two sites to refine and establish themes. At this preliminary stage, the analysis focused on the experience of creating digital stories from the participants’ perspective, as well as the modifications made to the current digital storytelling workshop to possibly implement in Vancouver and Toronto to optimize the benefits for persons with dementia.

Thematic analysis as described by Braun and Clark [23] was used to analyze our interview transcripts and field notes. The six steps of data analysis include: familiarization with the data, coding, searching for themes, reviewing themes, defining and naming themes, and writing up the report [23].

The facilitator transcribed all the audio recordings and documented observations. Coding entailed grouping phrases from participants and field notes into modes and then into themes. Themes determined from the codes will be discussed with the other researchers after analysis is independently completed at the three sites. Findings will be reviewed collectively at a later date.

8 Findings

Modifications made to the original digital storytelling workshop curriculum, such as a change in the number of participants in the workshop, the number of sessions, as well as a change in the style of sessions from all group sessions to a combination of one-on-one and group sessions seemed to enhance the level of interaction and engagement of individual participants, especially those who were quieter in group settings. Likewise, including the care partner in the digital storytelling process when the participant requested support was an effective way of maintaining flow and alleviating any sense of pressure the participant may have felt to recall details.

On the Standardized Mini Mental Status Examination (SMMSE), six of the participant scores varied from 20–29 out of 30. One participant was unable to complete the assessment because of poor visual acuity. The SMMSE was administered in the participants’ homes, after meeting one or two times. One of the care partners commented that her husband scored higher than he would have at a doctor’s office because of the context and setting. She stated that he knew who the person administering the assessment was and he was in his home, making it much easier for him to relax.

Overall, the participants enjoyed the sessions; they commented that they looked forward to the meetings. Their receptive demeanour and willingness to talk indicated that they were engaged in the process. One participant stated that she felt incredibly lonely since receiving her diagnosis and she enjoyed the social interaction this workshop offered. They were able to share stories, choose a particular story or topic that was meaningful to them, and take part in creating the digital story with support from their care partners and facilitator. The participants were attentive and put a great deal of care and consideration into the stories they chose, as well as the way they wanted to present them. The care partners were mindful to be involved without controlling or taking over the process to enhance the experience for the participant. Using the web-based WeVideo program was difficult for all participants but together with the facilitator, the participant was still able to provide input about the images, music and style of the digital story.

Participants were not always able to explicitly express how they felt or what they enjoyed during the sessions, but there was a level of participation and enthusiasm that indicated interest. The participants all recognized the facilitator at each of the sessions, even if they had difficulty recollecting the content discussed during previous sessions. The sense of accomplishment that came from developing and creating digital stories was observable to the facilitator and care partners. One care partner noted that when her husband shared the story he wrote with her he was “beaming.” Another care partner exclaimed to her husband during the session when he had recorded his story, “I am so proud of you!” One of the participants expressed that this was “above and beyond anything [he] thought was possible“when he saw the video for the first time.

9 Discussion

Preliminary findings from the Edmonton site are consistent with the literature pertaining to digital storytelling with persons with dementia in terms of enhanced relationships between participants and caregivers, as well as an increase in communication and interactions [5,6,7,8,9]. The relationship between the participants and facilitator also improved with time leading to a greater sense of trust and comfort [5].

There was a variability in symptoms among participants depending on the participant, time of day, and setting. One participant noted that he has good days and bad days. For him, a bad day meant his aphasia was worse than usual and he would struggle to get his words out. For another participant, she noted that her life had changed drastically since she was diagnosed with dementia and she knew she was not able to remember details about what we talked about during each workshop session, so she kept a notebook with her where she wrote down anything she felt was important to remember.

Although participants seemed to have slightly varying levels of dementia and presented different symptoms, they were all able to share distinct and meaningful stories. With encouragement from their care partners, the participants also prepared for workshop sessions by looking at photos, talking about the stories they wanted to focus on, and writing down notes to remind them of which stories they had shared. The participants were not comfortable using the technology without support from the facilitator, but expressed their appreciation when they were asked to provide input in choosing the images, songs and special effects that were all part of the digital story. Care partners played a critical role in the process as well by providing support in a loving and unintrusive way.

Themes that emerged from the data analysis consistently related to engagement. The participants were engaged with the process, the stories and in the relationships with their care partners as well as the facilitator. Participants were clearly proud of the stories they had created and care partners were also pleased with the end product. Being able to complete the workshop gave them a sense of accomplishment while helping them think about and share meaningful stories.

Participants had difficulty explicitly stating what they enjoyed or what the benefits were, but they all thought that despite the amount of work and effort involved, the time had been well spent. The opportunity to create a story as a legacy was one benefit that participants stated, which was also part of the literature review findings [9]. Some stated that they liked being able to access their stories whenever they wanted, in line with what past research noted [8]. Overall, the process of thinking about, sharing and creating a digital story was a positive experience, as a present moment memory [9].

The benefits of creating digital stories are promising and warrant further study. Follow-up with the participants after the end of the workshop could also provide insight into the lasting impact of digital storytelling for persons with dementia and should be part of future workshops.

10 Limitations

This study is still in the preliminary stage of analysis at the Edmonton site only. Therefore, the results shared here may not reflect the overall findings from all three sites. The relatively small number of participants at each site was necessary given the modifications made to the workshop to accommodate the needs of the participants.

11 Conclusion

Communication and preservation of memories are two significant challenges for persons with dementia. It can be daunting for them to reach out for social contact, to reflect on and talk about life experiences. When given the opportunity, people with dementia were able to share meaningful stories and provide input into creating digital stories that involve the use of computers, audio, and images. The use of technology was challenging, but an essential part of the process as it allowed the participants to share their stories in a provocative and stimulating way. This digital storytelling workshop can provide persons with dementia and their care partners with both a tool for creating stories and the opportunity to interact with others through their stories.