Memories are individuals' experiences of past and recent events, and are private until shared with others. Sharing memories plays an important role in building and maintaining human relationships (Yamasaki, Tomoko, & Nakatani, 2012) and telling others who we are and who we want to be (Hydén & Örulv, 2010). The importance of sharing memories is true for all individuals, but has a special implication for those with Alzheimer's disease (AD), who experience a slow loss of linguistic and cognitive skills (Egan, Berube, Racine, Leonard, & Rochon, 2010). The capacity for autobiographical memory is of fundamental significance for the experience of personhood and emotions (Conway & Pleydell-Pearce, 2000). Thus, it has a profound influence on self-consciousness and self-awareness and shapes individuals' self-concepts (Eysenck, 2012). Individuals with AD have difficulty recalling autobiographical events (Hou, Miller, & Kramer, 2005), and there is evidence that this reduces the sense of self and identity (Addis & Tippett, 2004).
Memory impairment is the most characteristic symptom of AD (American Psychiatric Association, 2000). Declining memory, along with progressive communication problems, leads to increased difficulty in recalling and communicating with others about daily activities and events (Egan et al., 2010). This decreased ability to communicate influences relationships with significant others. When words cannot be found, feelings of loneliness and isolation, as well as frustration and agitation, become more pronounced for the individual with dementia (Bassett & Graham, 2007) and family members (Fels & Astell, 2011; Holst & Edberg, 2011; Purves & Phinney, 2012). The ability to maintain a sense of mutuality is an important determinant of the experience of relatedness (Ablitt, Jones, & Muers, 2009), and research has shown that sharing the experience of recent daily events using photographs as prompts contributes to couples' increased sense of mutuality through conversation (Karlsson, Axelsson, Zingmark, Fahlander, & Sävenstedt, 2014).
Studies have also shown that different types of stimuli can be used as triggers to support memory and assist individuals with dementia in narrating their experiences (Woods, Spector, Jones, Orrell, & Davies, 2005). Use of photographs to prompt reminiscence of autobiographical memories, especially of past events, is a commonly used strategy. Many individuals have access to electronic devices with automatic cameras that can aid those with AD in “logging” their daily lives and recalling autobiographical memories (Hodges et al., 2006). However, such studies have less often described how such photographs can be used to prompt narration about recent autobiographical events among individuals with early-stage AD.
How individuals with AD narrate recent events with the support of photographs can be assumed to reflect aspects of their sense of self and identity (Sabat, 2001). It can also be understood by positioning theory, which studies cognitive processes that unfold in the way individuals tell stories in the dynamics of person-to-person encounters (Harr & Van Langenhove, 1998). Narrations reflect an individual's discursively and publicly produced Self and Positioning, reflecting acts of positioning in interpersonal encounters (Harr & Van Langenhove, 1998).
The current study therefore aimed to explore how the sense of self and identity were manifested in narrations about recent events enabled by a digital photograph diary.
The current study used a methodological approach, collecting conversational narrations about recent events illustrated in a digital photograph diary. The study was informed by positioning theory (Harr & Van Langenhove, 1998). Narrations about events were understood as being co-constructed between the individual with AD and his/her partner (Mishler, 1986), and as conveying aspects about the negotiation of sense of self and identity (Hydén & Örulv, 2010).
Participants and Data Source
Participants comprised seven household pairs who were included based on the criteria that they were living in their own home and one member of the pair had a diagnosis of AD with a score of 17 to 25 on the Mini-Mental State Examination (Folstein, Folstein, & McHugh, 1975) (Table). They were recruited from a research and development project, MemoryLane (access http://www.memorylane.nu). This project developed a process for creating a digital photograph diary using a wearable camera that took photographs automatically every 2 minutes and annotated them with geolocations using global positioning systems. The photographs and their associated data were regularly uploaded into a specialty software program that reviewed, sorted, and further annotated the photographs. The intent of the digital photograph diary was to support individuals with AD in communicating about events in daily life with family members and significant others.
Overview of Participants
Data were collected during communication sessions with each of the seven participating pairs. Two authors (E.K., S.S.) visited the homes of the participating pairs at a time when they had used the digital photograph diary for approximately 3 months. They were asked to choose and narrate a documented event from the digital photograph diary. Participants jointly told the story of the event to the researchers. Sessions were audiorecorded and lasted 30 to 60 minutes. Immediately after each narration session, the two authors thoroughly discussed and compared their observations and then made common reflective field notes (Sävenstedt, Zingmark, Hydén, & Brulin, 2005). These notes described (a) participants' contributions and level of engagement in communication, (b) the interaction between the pair, and (c) the body language and emotional expressions of the individual with AD.
Discourse analysis was used to study the recorded communication sessions (Silverman, 2001). Recordings were transcribed verbatim and annotated with expressions of laughter, sighing, pauses, and other types of nonverbal communication (Mishler, 1986). The authors first listened to the recorded sessions several times to get an overall sense of the communication and aspects that could guide further analysis. A stepwise approach was then used, in which communication sequences that corresponded with the study aims were first identified and then grouped into areas of interest. Further analysis was guided by questions, such as how the photographs influenced narration in relation to a sense of self and skills and abilities the individual with AD associated as facets of their identity (Harr & Van Langenhove, 1998), how the individual with AD and his/her partner interacted, and whether the photographs facilitated or impeded the individual with AD in his/her narration. The analysis also considered potential influence from the researchers. The authors discussed the results of each step until consensus was reached.
The results are arranged into two themes: (a) Manifestations of Sense of Self and (b) Sense of Self in Relation to Others. These themes describe the authors' interpretations of how individuals with AD attempted to understand what the photographs of recent events illustrated in relation to their sense of self and the skills and abilities they associated with themselves.
Manifestations of Sense of Self
The ability to narrate recent events varied among individuals with AD and also depended on the situation. This variation can be described using the metaphor of being in a mist that can be dispelled to various degrees: from being fully involved and clearly visualizing the event to a complete absence of any narrative capability or personal connection to the event.
In all recorded sessions, the authors' interpretation of the communication was that the individual with AD could not recall and relate to the event before the photograph was shown; the event was hazy and not visible. However, when some participants looked at the photographs and communicated with the family member about what was shown, they could relate to the event as something they had been part of and fully involved in. In other recorded situations, the photographs only prompted the individual with AD to narrate to a limited extent, as if they could only associate themselves with the event to a limited degree, and the event remained unclear and they had little personal attachment to it. There were also situations where the photograph did not enable any narration related to the individual with AD or places and other individuals, despite guidance from the family member.
Clearing the Mist. Clearing the mist describes what happened when individuals with AD were able to discuss a recent event illustrated in the photographs in a way that gave an impression that they could visualize themselves as having an active role in it. For example, one participant looked at recent photographs from her weekly choir rehearsal. Some photographs showed choir members and others showed details from their songbook. The participant appeared engaged and emotionally involved in the illustrated event and gave spontaneous comments related to herself and her ability to sing the songs depicted.
Dispelling Some of the Mist. Dispelling some of the mist is a metaphor for situations where the photographs only enabled the individual with AD to narrate in relation to their sense of self to a certain degree. In these situations, they had more difficulty in immediately recalling and identifying the recent event illustrated in the photographs. Their narrations tended to be vague and fragmented in relation to themselves, as well as to other individuals, places, and the illustrated event. They never conveyed an impression that they could visualize themselves as being fully part of the event. In such situations, the participant could develop his/her narrations to some extent with the help of prompts from his/her family member or the researchers. For example, participants might be prompted by the comment, “This is a place you really enjoy visiting” or “This is someone you know quite well.”
One participant and her daughter were looking at photographs from the family's traditional Christmas baking session. The researchers noted that although the photographs made the participant happy, she at first seemed uncertain about where the baking took place and her own involvement in the event. With the help of prompts from her daughter, she was gradually able to develop her narration and talk about what they had done and her own involvement in the baking event.
Remaining in the Mist. In some situations, individuals with AD were unable to communicate that they were able to see themselves as involved in the recent event illustrated in the photographs. Neither the photographs nor the prompts could clear the mist that shrouded the event, and there was no indication that they could recall that they had been part of it; it was as though the photograph had no meaning to them and they had no clues or sense of direction. In some situations, individuals with AD made their best effort to recall and discuss the event by fabricating stories. It was observed that although they could not recall the event, they could enjoy participating in related conversation and were stimulated. For example, when one participant was looking at photographs from the christening of a close relative's grandchild, it was obvious that she did not remember being part of the event and did not recognize those participating in the ceremony even though her partner prompted her by talking about those whom she knew and incidents that happened. Nevertheless, she still seemed to enjoy being included in a pleasant conversation about a family event, although she guessed it was a wedding party.
There were also situations where individuals with AD could not relate to the illustrated event itself, but the photograph and conversation stimulated talk about personal experience related to their sense of self. For example, photographs from a recent visit to a market garden led the same participant to tell a long story about her own interest in flowers and her mother's outstanding skill at making anything grow in the gardens of her childhood home. She continued her narration by including significant episodes about her father. Another example was when one male participant, while looking at a photograph of a neighbor, talked about his former professional career and the family's social interaction in their local community. A second male participant, who found it difficult to recall most events, saw a photograph of a bicycle that resembled the one he used when he was young, which made him talkative and stimulated and led him to discuss his earlier work as a salesman.
Sense of Self in Relation to Others
In some narrations in relation to the illustrated events, it was obvious that individuals with AD were attempting to understand themselves, their sense of self, and their experiences with the support of their partner and those shown in the photographs.
Shared Connection to the Photographs. The flow of narrations about events in the photographs seemed to depend on whether the partner had been involved in the event. When both members of the pair were part of the event, there was often mutual joy and satisfaction in having shared memories to discuss. The partner could prompt communication by giving clues or filling in details that the individual with AD had forgotten. In this way, the individual with AD could understand him/herself and his/her experiences in relation to significant others.
Individuals in the Photographs. The photographs in the digital diary illustrated individuals, places, and events in different ways, and this had an impact on the narrations and ability of the individual with AD to relate to what was shown. Photographs that illustrated people were more likely to prompt narration than those showing outdoor settings, places, and buildings. Photographs in which individuals with AD could recognize themselves were of special interest, and many laughed and joked about their appearance.
Stress Levels. The level of stress associated with communication about events was an important factor in the ability of the individual with AD to feel involved in and relate to the situation. In conversations that took the form of questions and answers, individuals with AD often felt commanded to perform and usually wound up stuck and hampered in their communication. Some showed signs of irritation and frustration when they felt that the conversation became an inquiry to test their ability to remember and identify the content of the photographs. For example, when asked about a photograph's content several times, one male participant asked, “What kind of question is this?” One female participant was unable to recognize photographs from recent events, which led to self-accusation and an increased level of stress. Both participants' speech was fluent when there was no stress attached to the communication.
The results indicate that photographs of recent events can enable individuals with AD to participate in co-constructed narrations. Through such narrations, individuals with AD attempt to understand events depicted in recent photographs in relation to their sense of self and skills and abilities that they associate as facets of their selfhood.
It can be argued that the use of this type of memory aide verges on reality orientation rather than entering the reality of the individual with AD. However, communicating about shared daily events is a collaborative activity between household members, in which the partner can provide contextual cues for the individual with AD. The focus is not just a question of delivering a story but also sharing an activity or event in which they are mutually involved (Hydén, 2011). Telling and listening to stories is one of the most powerful instruments for sharing experiences and a way of seeing the world through the eyes of another (Hydén & Antelius, 2010). Storytelling is also an important way for individuals with AD to maintain a sense of self (Sabat, 2001).
Narration often becomes problematic for those with dementia due to communication difficulties, which can reduce family members' motivation to engage in discussion about daily events (McHugh, Wherton, Prendergast, & Lawlor, 2012). One potential consequence of reduced communication ability is a decline in relationships and quality of interaction between partners (Savundranayagam, Hummert, & Montgomery, 2005). At the same time, many couples wish to maintain a reciprocity and an “us identity” (Davies, 2011), and live meaningful lives by remaining active agents, retaining control, and maintaining hope about their lives (Pesonen, Remes, & Isola, 2011). Photographs can be used as a way to review shared lives, as a strategy to refocus on partnerships (Ingersoll-Dayton et al., 2013), and as a tool to maintain reciprocal conversation between partners (Karlsson et al., 2014). Other studies (Genoe & Dupuis, 2014; Savundranayagam, Dilley, & Basting, 2011) have found that communicating about photographs is a meaningful activity that contributes to reaffirming the selfhood of individuals with memory loss and promoting relationships with family members.
Most research on individuals with AD concerning the use of photographs and other prompts to stimulate reminiscence has focused on events in the more distant past (Woods et al., 2005). The current study indicates that photographs can support narration about recent events. This finding was specifically true in situations where conversation about a photograph elicited mutual interest and joy from the individual with AD and his/her partner. When partners had been involved in the events, they could confirm what the individual with AD was saying, which strengthened the confidence of the individual with AD and his/her ability to talk about the event. In this context, photographs can be viewed as a way to enhance the embodiment of collaborative storytelling (Hydén, 2013).
Storytelling is an activity in which individuals with AD and their partners can contribute, although presumably the responsibility for collaborating, pursuing the narration, and organizing the interaction rests on the unaffected partner (Hydén, 2013). When pairs looked at photographs from recent events, some individuals with AD became stressed when the conversational atmosphere became more interrogative (e.g., when their partners posed questions about the event and those shown in the photograph). Such questions can represent a threat of failure to individuals with AD and may undermine or jeopardize their self-confidence (Small & Perry, 2005). If the partner instead communicates in a more supportive and less controlling way, communication with the individual with AD becomes more fluent. Thus, partners have the power to influence conversational outcomes in a positive or negative direction through their attitude and accompanying verbal behaviors in their interactions and relationships with individuals with AD (Small & Perry, 2005).
When participants with AD were only partially able to engage in narration about photographs of recent events, they commonly exhibited insecurity and often asked their partners to confirm their statements, which is a coping mechanism for those who are no longer able to rely on their own memories (Piasek, Irving, & Smeaton, 2012).
The ability to discuss recent daily events is connected to the ability to participate in ongoing daily life, which is a vital part of human life and lived experience (Law, 2002). Individuals with dementia explore their sense of self and the changes in how they perform everyday activities in the context of their social relationships and through immediate reflections on their forgetfulness (Öhman, Josephsson, & Nygård, 2008). A digital diary can be a useful tool in this context.
The study design did not allow analysis of the influence of participants' level of cognitive impairment on their ability to talk about events illustrated in a digital photograph diary. It is reasonable to assume that the degree of impairment had an impact on their ability to narrate (Davies, 2011) and could therefore be seen as a limitation.
The results of the current qualitative study illustrate the complexity of supporting individuals with AD as they discuss events using a digital photograph diary. The results of this type of analysis are by definition contextual, and further studies are needed to confirm or refute these findings. However, the recorded conversations represent a rich body of data that have been analyzed following a rigorous methodology, and what has been learned from this study will contribute to the body of knowledge about how best to support individuals with AD to narrate autobiographical memories with the support of a digital diary (Patton, 2002).
A digital photograph diary illustrating recent and past events can be a useful tool to support communication between individuals with AD and their family members because the photographs can stimulate narration. The ability to discuss recent and past events and share memories between partners supports the sense of self, strengthens relationships between partners, and increases the ability of individuals with AD to participate in everyday life. Thus, a digital diary could be an important part of a person-centered approach provided by home health nurses. Further and larger studies evaluating the use of digital photograph diaries are needed to gain a better understanding of their use and the potential impact on the quality of life for individuals with AD and their partners.
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Overview of Participants
|Couple||Age (Years)||Years With AD||MMSE Scorea||Education Levelb|
|Without AD||With AD||Without AD||With AD|