Narratives-in-action of people with moderate to severe dementia in long-term care: Understanding the link between occupation and identity

ABSTRACT

Meaningful occupation is a frequently stated part of person-centred care, but that need is often unmet in long-term care (LTC) settings. There is little in literature about the perspective of people with moderate and severe dementia on their identity construction and social roles. This study deals with the following question: how do men and women with moderate to severe dementia living in long-term care maintain aspects of their identities and social roles? It also gives insight into the application of a narrative-in-action approach with people with advanced dementia. Using a qualitative research design in the ethnographic tradition, observations, interviews and informal talks whilst doing occupations with people with dementia and their carers were used for data collection in two institutions. A narrative analysis based on a narrative-in-action approach was applied. The findings show the efforts of people with dementia doing “identity work” in a confining environment. They used narratives, objects, and occupations to express their identities despite their cognitive or physical impairments. The narrative-in-action approach offers the potential to better understand the perspective of people with dementia who have problems expressing themselves verbally. Even though they are fragmented, repeated stories have an important function in constructing identity and should not be regarded merely as a symptom of dementia. This study allows for a better understanding of the relationship between occupation, its symbolic meaning, and identity in people with advanced dementia.

有意义的生活活动是以人为中心的护理经常提及的一方面内容。但在长期护理（LTC）部门，这种需求往往得不到满足。关于中度及重度痴呆症患者的身份结构和社会角色方面的文献资料很少。这项研究涉及以下问题：生活在长期护理机构的中、重度痴呆症的男性和女性如何维持其身份和社会角色？它还使我们深入了解用于晚期痴呆患者的行动-叙事方法的应用。采用人种学传统中的定性研究设计，通过观察、访谈以及与痴呆症患者及其护理者一起进行活动时的非正式谈话，在两个机构中收集数据。运用行为-叙事分析法进行了叙事分析。研究结果显示，痴呆症患者在局限的环境中努力地做“身份工作”。他们使用叙述、物体和生活活动来表达他们的身份，尽管他们的认知或身体有缺陷。行动-叙事法使我们有可能更好地理解口头表达有困难的痴呆症患者的观点。尽管这些故事支离破碎且重复，它们在构建身份方面具有重要作用，不应仅仅视为痴呆症的症状。这项研究有助于更好地理解晚期痴呆患者的生活活动、其象征意义和身份之间的关系。

La ocupación significativa es destacada con frecuencia a la hora de reflexionar sobre la atención centrada en la persona. No obstante, a menudo, los entornos de atención a largo plazo (ltc) no satisfacen esa necesidad. En la literatura existen pocos estudios que aborden la perspectiva de las personas que padecen demencia moderada y grave sobre la construcción de su identidad y sus roles sociales. El propósito del presente estudio es responder a la siguiente pregunta: ¿de qué manera los hombres y las mujeres con demencia moderada a grave que viven en ámbitos de cuidados a largo plazo mantienen aspectos de sus identidades y sus roles sociales? Además, el estudio proporciona información sobre la aplicación de un enfoque de “narrativa en acción” a personas que sufren demencia avanzada. Para la recopilación de datos en dos instituciones se utilizó un diseño de investigación cualitativa acorde con la tradición etnográfica y las observaciones, entrevistas y charlas informales efectuadas mientras las personas con demencia y sus cuidadores realizaban determinadas ocupaciones. Posteriormente, se aplicó un análisis narrativo basado en un enfoque de narrativa en acción. Los hallazgos dan cuenta de los esfuerzos realizados por quienes padecen demencia al efectuar un “trabajo de identidad” en un entorno de confinamiento. A pesar de sus discapacidades cognitivas o físicas, emplearon narrativas, objetos y ocupaciones para expresar sus identidades. El enfoque narrativo en acción ofrece la posibilidad de comprender mejor la perspectiva de personas con demencia que muestran problemas para expresarse verbalmente. Aun cuando están fragmentadas, las historias repetidas cumplen una función importante en la construcción de su identidad y no deben considerarse simplemente como un síntoma de demencia. Este estudio posibilita comprender mejor la relación entre la ocupación, su significado simbólico y la identidad en personas con demencia avanzada.

KEYWORDS:

• Occupational science
• Ethnography
• Self
• Long-term care
• Dementia
• Meaningful occupation

Little is known about the relationship of identity and meaningful occupation in people with advanced dementia. This paper has two aims: first, to present the application of a narrative-in-action approach (Alsaker, Josephsson, & Dickie, 2013) in people with advanced dementia and second, to present findings about the relationship between identity and occupation in this group. After a short literature review, the design and methods of the study are described, followed by a more in-depth discussion of the theoretical background of narrative theory. In the findings section, two case stories of older women with advanced dementia are presented and discussed. Finally, implications for occupational science and dementia care are stated.

Dementia and Everyday Occupations

Dementia is a syndrome involving changes in the brain that lead to disability and problems in performing everyday occupations. It is a complex phenomenon with no medical cure. Long-term care (LTC) institutions offer care to people living with complex health issues if the situation at home is no longer manageable. Dementia is one of the main reasons for moving to a care home, yet residents are at risk of occupational deprivation (O’Sullivan & Hocking, 2006).

One of the main issues in dementia care is to support people in their personhood. Kitwood (1997) formulated five basic needs of people with dementia: inclusion, attachment, comfort, identity, and occupation. According to Kitwood, meeting these needs is a way to maintain personhood in dementia care. In this respect, meaningful occupation is seen as an essential part of person-centred care (Kitwood, 1997). Twenty years later, Möhler, Renom, Renom and Meyer’s (2018) systematic review of the effect of personally tailored occupations for people with dementia in long-term care concluded that such occupations might have positive effects on some psychosocial outcomes, especially challenging behaviour. They highlighted that it is more difficult to assess the “meaningfulness” of occupations with people with more advanced dementia and speculated that occupation might play a more important role in the early stages. Fortunately, evidence stemming from people with dementia themselves is growing, (Han, Radel, McDowd, & Sabata, 2016; Orrell et al., 2008; Raber, Teitelman, Watts, & Kielhofner, 2010), but the perspective of people in the moderate to severe phases has been neglected (Caddell & Clare, 2010). There is, however, some evidence that when occupations are perceived to be irrelevant, people with mild and moderate dementia prefer not to do anything rather than attending organised sessions (Tak, Kedia, Tongumpun, & Hong, 2015).

People with moderate and severe dementia may need more support in initiating and performing occupations, yet there is no evidence that the need to engage in meaningful occupation decreases with the onset of a neurocognitive disorder. On the contrary, Han et al. (2016) stated that people with dementia want to stay engaged in occupations that are meaningful, but that the concept should be investigated in more detail, also in relation to the severity of dementia. They found in a systematic review that occupations were judged as meaningful if they were connected with self, with others and with the environment. Identity has been linked to occupation (Christiansen, 1999), even in the context of dementia (Hasselkus & Murray, 2007), but it is not known how a person with dementia re-establishes roles and a sense of identity when he or she moves to a nursing home (Harmer & Orrell, 2008).

Literature stemming from the field of occupational science shows that the occupational experiences of people in LTC are influenced by the organizational (care) culture and the environment (French, 2002). To better understand such a complex phenomenon and its transactional nature requires a flexible methodological approach and a complex theoretical framework. Using an occupational perspective can be a means to add to a more differentiated understanding of the transaction of the individual person, occupation, and the environment in a certain situation (Dickie, Cutchin, & Humphry, 2006). One concern of occupational science is to provide a synthesis of knowledge on occupation because it is fragmented in other social sciences (Carlson, Park, Kuo, & Clark, 2014). Carlson et al. (2014) presented a synthesis about self and identity, describing four characteristics of occupation: first, that they are purposeful and goal-directed; second, that they are performed consciously and intentionally; third, that they are temporally, historically and socio-culturally embedded and, finally, that they tend to be meaningful in the situational context. Carlson et al. formulated the need to expand the understanding of the relationship between self and occupation because the self and the context are inseparable. That relationship is even more important in people with cognitive impairments such as dementia who may not perform occupations consciously, or in a goal-directed and understandable manner, but for the single reason of experiencing pleasure and joy while performing them.

Identity and Self in Dementia

Concepts like personhood, identity and self are often used interchangeably in the field of dementia research. Sabat (2001), a social psychologist, claimed that the self is preserved and proposed three different kinds of selves. Self 1, the personal identity, can be observed when people use the pronoun “I”. Self 2 consists mainly of attributes and beliefs that people have about themselves, for example being a good cook. Self 3 consists of the social persona that is connected to roles people inhabit, for example as a friend, parent or worker. Self 3 is the most endangered part in people with dementia because it is dependent on relationships and the coproduction of the public persona with others in a social situation (Sabat, 2001). Identity in this understanding is not something in the “core” of a person, but fluid and socially constructed. However, Sabat’s work, like many others, is based on interviews, thus missing performative aspects and spontaneous narratives.

Using observations might thus be a more appropriate method. Kontos (2012) conducted an ethnographic study in a dementia-care unit to explore the selfhood of people with dementia. She concluded that these people are in contact with the world through occupation and engagement in a “prereflective” way of agency (Kontos, 2012, p. 332). She used a thematic analysis in her work, thereby neglecting the transaction of the body, environment, occupation, and the altered cognitive skills. A complex method of data collection requires a complex method of data analysis to capture transactional processes.

Narratives and Identity

Narrative methods have a tradition in occupational science for revealing processes linked to identity and context. For example, it has been claimed that narratives are socially produced, convey meaning and are situated (Josephsson, Asaba, Jonsson, & Alsaker, 2006), and that they play an important role in the construction and maintenance of individual and collective identities (Cortazzi, 2001). Wiseman and Whiteford (2007) also stressed that occupation and identity are subjective and contextually bound. Notwithstanding that advice, it is challenging to explore the perspective of people with moderate and severe dementia because they have problems with verbal communication. Therefore, it is inadequate to focus on verbal data only.

Since existing methods seem to be inadequate to better understand how people with advanced dementia and verbal communication problems can be supported in constructing their social identities, a narrative approach using narrative-in-action might be a more viable way. There is a gap of knowledge about the link between occupation and identity in people with advanced dementia living in LTC. Therefore, the research question was: how do men and women with moderate and severe dementia living in LTC maintain and construct aspects of their identities and social roles? The aim was to better understand the function of occupation in constructing identity and personhood and gaining meaning in LTC situations.

Design and Methods

This paper is derived from a doctoral thesis exploring the perspective of people with moderate and severe dementia living in LTC (Tatzer, 2017). A qualitative design inspired by ethnography was used (Hammersley & Atkinson, 2007). Methods for data collection were observations, interviews and informal talks with two women and two men with moderate or severe dementia in two different LTC institutions while they were engaged in occupation (Nygård, 2006). Next of kin and staff were involved in the data collection over a period of 2 years (2013-2015). Three family members were part of the observations and contributed elements of life-stories to the data. One family member was interviewed by telephone. Periods of observation lasted from 5 months to 12 months with a frequency of 11 to 21 contacts with the participants. Occupations observed ranged from everyday routines within the organization (e.g. meal-times) to care occupations (e.g. assisting with dressing), activity-programmes, and visits by relatives. Data comprised field notes from observations, transcripts from observations and interviews, and informal talks with people with dementia, staff, and relatives. This resulted in rich data, which were organized with MAXQDA software.

Participants and sampling

A maximum variation strategy (Flick, 2007a) was used in the sampling process and resulted in the recruitment of four participants. They differed in terms of gender, communication skills, mobility, age and educational background. All of them were 70+ years old (74, 79, 80, 93) and had a diagnosis of moderate to severe dementia.

Their Mini Mental Scale Examination (Folstein, Folstein, & McHugh, 1975) scores ranged from 17-11 points at the beginning of the data collection. All but one declined in the respective period to below 10 points, indicating severe dementia. The Pool Activity Level (PAL) instrument was used to determine participants’ activity level (Pool, 2008). This is a checklist, which determines the abilities of a person with dementia to engage in occupation. Pool (2008) described four activity levels: planned, exploratory, sensory and reflex. Two of the participants were on an exploratory level, which means they were able to engage in simple three-step occupations and two on a sensory activity level, since they could perform one-step occupations.

Context

Data collection took place in two LTC institutions in Austria. One of them was a public institution with a special care unit for people with dementia. The other one was a private home using a house community model. These two were selected for data collection since experts in the field of dementia described both institutions as best practice examples.

Ethical considerations

The project was approved by the ethics committee of the province of Lower Austria (GS4-EK-18/002-2013). Many ethical considerations arise when doing research with people with dementia living in institutions (Röse, 2016) and were respected in this study. Thus all participants were involved in a process consent and gave assent (Black, Rabins, Sugarman, & Karlawish, 2010). In addition, written informed consent was given by their next of kin. All names used are pseudonyms.

Limitations and methodological aspects

The aim of qualitative research is to gain a better understanding and not to make generalized assumptions (Bogdan & Biklen, 2007). Trustworthiness was established by keeping a research diary. Prolonged engagement and the triangulation of methods of data collection deepened understandings. Transparency in the research process is a criterion of quality in qualitative research (Flick, 2007b). In this respect, reflexivity was an important aspect and is described elsewhere (Tatzer, 2017). It was crucial to establish good rapport with the next of kin and staff. Due to stipulations from the ethical committee, it was not possible to include people with advanced dementia without accessible next of kin.

Theoretical background

Narrative analysis can use stories as data, and results can also be presented as stories (Polkinghorne, 1995). This has been done with older women in relation to identity (Tatzer, van Nes, & Jonsson, 2012) but has rarely been done with people with dementia (Hydén & Örulv, 2009; Robertson, 2014).

People with moderate or severe dementia are not able to tell long stories – but they use gestures and sounds to compensate for communication problems. Close relatives of people with dementia can support the act of storytelling by “scaffolding”. This term, coined by Bruner and used by Hydén (2013), describes how next of kin support their family members with cognitive disorders, while telling stories by interpreting their sounds and gestures.

Narratives can link heterogeneous elements and create meaning (Mattingly, 1998). Alsaker, Bongaardt, and Josephsson (2009) developed the narrative-in-action approach that combines narrative theory with an ethnographic approach. Based on the work of Mattingly (1998) and Ricœur (1988), it claims that narratives are embedded in actions and occupations (Alsaker et al., 2013). When people engage in an action, they produce images that they connect with past or future events to create a possible story (Ricœur, Blamey, & Thompson, 2008).

Alsaker et al. (2013) and Mattingly (1998) based their understanding of the relation of narrative and action on Ricœur. Meaning is created through a threefold process that Ricœur (1988) called mimesis. Mimesis 1 is an unconscious praxis, a preunderstanding of the world that is full of meaning structures and symbolic representations. According to Ricœur (1988), people have a preunderstanding of human action linked to semantics, symbolic meaning and temporality. The next step, Mimesis 2, is defined as a configurative process, where plots are created. Events are put together to create a story through emplotment (Polkinghorne, 1995). Ricœur (1988, p. 106) called this “prendre ensemble”, meaning “putting together”. Heterogeneous elements can thus be put together to form a coherent story that conveys meaning, a process he called configuration. Finally, in Mimesis 3, praxis is communicated in a narrative to form a story with a plot.

Human beings are entangled in stories (Ricœur, 1988). Bruner (1986) described two principle modes of human thinking: the logical, “paradigmatic” cognition and the “narrative mode” (p. 13). The narrative mode has the goal of understanding human action. Referring to research with children, Bruner (1990, p. 80) stated that humans may have a “protolinguistic” readiness for narrative organization. In his opinion, human mental activity depends on a “cultural toolkit” (Bruner, 1986, p. 15) for its full expression. The narrative-in-action approach combines narrative theory with ethnography. The triangulation of interviews, observations, and transcripts of these is necessary to capture these otherwise missed elements. The transcripts of the recorded observations made it possible to use the fragmented verbal expressions in relation to the field notes of the observations and led to a much better understanding of the situation.

Analysis: Narrative-in-action with people with advanced dementia

The data were read several times and memos were written. In the first step, narrative elements were put in order to obtain a chronological life-story (Molineux & Richard, 2003). The plot was identified (Polkinghorne, 1995) and interpretation took place in a hermeneutical circle based on the narrative-in-action approach (Alsaker et al., 2013). The final case story followed a four-fold structure:

1. First, the person was characterised briefly and the level of dementia and the result of the PAL were presented.

2. In the actual narrative analysis, a short life-story and the personal context were presented. Some of the key situations were described in order to illustrate the generation of meaning through occupation and action in relation to identity.

3. The next step was a more in-depth interpretation based on the narrative-in-action approach (Alsaker et al., 2009). Inspired by Ricœur, its intent was to show the transaction of occupation and meaning resulting in an experience of continuity and identity.

4. In the final narrative step the different narrative layers were connected – the individual, the social (shared stories), the institutional and cultural layers (Gubrium & Holstein, 2008).

The case stories were rewritten several times, resulting in a final story. See Figure 1 for a diagrammatic representation of the process.

Figure 1. Schematic description of the analytic process

In this process, important elements were identified through an inductive process. Elements identified were key stories, incredible stories, repeated stories and shared stories. Key stories that conveyed aspects of identity and meaning often emerged from key situations. For example, Mrs. Bacher was 93 years old at the time of data collection and had lived with dementia and multiple other health issues in LTC for several years. She presented herself as a person with particular preferences and a history. She referred to herself as a “coffee sister” (German: “Kaffeeschwester”) in one of our first meetings as shown in the transcript:

Her face lights up; she looks into my eyes and says, ‘I am a coffee sister’. I start laughing, I think ‘coffee sister’ is a nice expression, and ask, ‘Are you?’ ‘Yes, I am’ she replies. ‘How much coffee do you usually drink?’ I ask. ‘I brr … ake … what is there!’ she replies and mumbles something I don’t understand (I1T1-4: 143-149).

Being a “coffee sister” is a social identity that presents a connection between her former and her present life. In her past, she used to host coffee gatherings and even had a tavern for a certain time. In the nursing home, she often asked for coffee and also offered me coffee on several occasions during the observations, acting like a host. Drinking coffee was an occupation that she could still actually do in her present life. It was thus an important metaphor linked to her identity. This was found again in a key situation during a walk in the park that is described later in this paper.

Incredible stories contained elements that were surprising, even unbelievable. Mrs. Bacher had been using a wheelchair for several years and was unable to move it on her own. Once I asked her “Tell me about your morning” as a part of some introductory small talk and she replied, “I have been walking in the park. I really enjoyed the sun”. I knew that walking in the park had a special meaning for Mrs. Bacher in the context of her life-story, so I paid attention to this expression and did not categorize it as “untrue”, despite my knowledge of her mobility limitations.

Repeated stories: Another example for incredible, unrealistic and repeated elements was Mrs. Bacher’s story about her husband. She told it repeatedly, but with a different ending each time, depending on the situation. The basic plot was that she was waiting for her husband. This was an interesting biographical element because she had been waiting for her husband to come home when he was a prisoner during World War II. After a trip to the park including a coffee break, she said: “I think, today, father will already be home, when we get back … ” (Bacher\10_T_B:1378). In this example, there was a happy ending to her narrative, giving insight into her current state of well-being. The fact that her husband had already died years ago is not as important as the hidden meaning.

Shared stories: Other important elements were stories told by staff, next of kin and the research participant about the same event or situation. One example was an episode in Mrs. Bacher’s life at the care home. She once got very ill whilst there, but recovered due to everybody’s effort. Staff members, her daughter, and she herself told this story as a dramatic event. She was described as persevering because she had almost died but did not “give up”. Being a “survivor” was acknowledged as the result of a shared effort in the institution, and was thus part of her current social identity. The different stories were integrated and resulted in a final story.

Findings and Narrative Case Stories

In the following section, parts of the stories of two participants, Mrs. Bacher and Mrs. Mischke, are presented with two aims in mind: first, to highlight the role of occupation and action for constructing identity in people with advanced dementia; second, to present the use of the narrative-in-action approach with these people.

Walking in the park: Meet Mrs. Bacher

In this section, I present Mrs. Bacher and her transactional experience of “being a coffee sister” by walking through the park and having a coffee break. Parts of her story were used in the previous analysis section as an example.

First contact and measures

Mrs Bacher’s PAL activity level (Pool, 2008) stated “sensory” indicating that she could perform one-step occupations. The MMSE was no longer feasible at that time. The situation takes place in the LTC institution while preparing for the walk with Mrs. Bacher’s daughter (using the wheelchair). Mrs. Bacher’s cognitive impairment becomes obvious since she does not recognize her daughter Regina at first, and it takes several rituals to help her recognize her as the following excerpt shows:

R: ‘Do you know me now?’ (Gives her a quick peck on the mouth)

B: ‘Yes! Now I know!’

R: ‘You recognized me by my peck, didn’t you?’

B: ‘Yes, yes!’ (Bacher 10: 25).

Being “a coffee-sister”: Transactional perspective

Almost every week in the summertime, Regina takes her mother for a trip to the park. The situation takes place after the greeting scene in the institution on the same day. Mrs. Bacher has taken walks in this park throughout her whole life. When Regina and her sister were children, they often took walks with their parents at the weekend together and had coffee afterwards in a traditional restaurant in the park. After the visit to the park and having coffee, Mrs. Bacher states that her husband will already be waiting for her at home. In this situation, the narrative is a happy ending with expressions of pleasant anticipation. The park is a physical space that represents continuity throughout her life as a mother, wife and woman, but also as a “coffee sister”.

She used the story about waiting for her husband in multiple events and adapted the plot to the audience, which is a complex achievement. It also challenged the audience. She did not use the convention of “as if” when she told us about waiting for her husband. She did not say, “It feels like when I was waiting for my husband, who was a prisoner of war”. Instead, she says, “My husband is in the United States at the moment. … But he has already told me that he will return soon” (Bacher_Mittagessen:33). The audience has to be ready to break with narrative conventions and to focus on the symbolic meaning instead.

Drinking coffee is a routine occupation in the institution and thus provides the possibility for work on identity through action – a fact that the staff in the institution recognize, but do not use explicitly. The symbolic dimension and positive identification of “being a coffee sister” was ignored. Drinking coffee is something Mrs. Bacher could still actually do in her current life. During my visits, she repeatedly asked for a coffee, yet the staff did not use this opportunity to strengthen her identity in this regard and contribute to her well-being. They replied that she had already had some in the morning instead of integrating it in the daily care routines.

On angels and garden gnomes: Meet Mrs. Mischke

In the next section, parts of the story of Mrs. Mischke are presented in order to illustrate the application of the narrative-in-action approach in more detail.

First contact and measures

Mrs. Mischke was a working class woman, who was proud of having cared for her four children while working in a sugar factory in Austria. She moved to the dementia care unit about a year before this study started, when caring for her became too distressing for her daughter. Her MMSE (Folstein et al., 1975) score of 12 points indicated moderate dementia, and did not change for the period of data collection over nearly a year. Her activity level on the PAL (Pool, 2008) defined her status as “exploratory”. That is the second of four levels indicating that the person can carry out familiar tasks in familiar surroundings.

The caretaker without a house

Mrs. Mischke was 78 years old at the time of the data collection. Her father died young in the Great War and she worked in farming from a young age. She became a mother at 19 and raised four children with little financial means, supporting her family together with her later husband. As an older woman, she lived in a flat on a council estate with shared facilities such as a community garden. She took care of the garden, helped raise her grandchildren, and liked to play cards and socialize.

As she got older, her health declined due to respiratory and cardiovascular problems and she was diagnosed with dementia. Her daughter started caring for her and they lived together in her daughter’s house for several years. During this time Mrs. Mischke often “ran away” and survived these trips “only with tons of luck” (Mischke\53_M_Bio: 11) according to her daughter Hella. She frequently talked about “going home” and missing her mother. At the dementia ward, she was forced to wear an electronic device that signalled when she was trying to leave. She complained about feeling locked-in: “Sometimes I feel so locked-in. I can’t tell you why. The staff are nice … but … waiting drives me crazy” (Peters\43_P_17: 47). Mrs. Mischke was not able to find her room on her own. She liked telling stories about her life, family, and work. She often had trouble finding the right words, but continued using sounds and gestures. She was aware of her health problems and lack of orientation and complained about the lack of choices in the dementia-ward: “That you can go wherever you like. Or do something. But. No! … You can never choose! It always turns out somehow different” (Mischke\T_50: 464 –482).

On angels and garden gnomes: “Narratives in action”

In the following section, one of the key situations is described. In the following example, due to a small action, a powerful narrative emerged. Mrs. Mischke and I were sitting at a table in the community area; she had her handbag with her. In my field notes, I wrote down:

It's a huge brown handbag, it looks heavy. I ask her what is in her bag. She carries the bag around her neck, in front of her chest; it is an odd way to carry a handbag. She opens it, rummages in it and takes out a statue of an angel. The statue is made of ceramics and about 30 cm high. She takes out four other smaller angel statues, made of plastic, or ceramics … . I ask her why she carries them around. She tells me: ‘Because, this is somehow my thing’ (Mischke\T_51:205 –228)

In another situation, her daughter Hella was visiting. Again, we were sitting at a table and Mrs. Mischke took out her angel figures. A story unfolded while she was positioning the angels on the table, cleaning them and looking at them, showing them to me.

Hella tells a story about the angels. ‘This is typical of her, the junk, the more kitsch, the better! That’s what you also did with the garden gnomes, wasn’t it? … Like a caretaker.’ (Mischke\53_M_Bio: 11 –17)

Together, they created parts of her life story by telling me about the angels. Mrs. Mischke used to take care of the community garden in her former apartment building, Hella explained to me. One of her valued roles was being a “caretaker” – she kept everything in order for the community. She collected angels and garden gnomes, which she painted and restored every year. Mrs. Mischke used to have more than 140 garden gnomes in the garden. People greeted her, asked about her garden gnomes and appreciated her work in the garden thus creating a valued role and social identity. In the dementia care unit, it was no longer possible for her to care for a garden, but she still kept her beloved angels. The act of pulling out the angels and arranging them on the table was the starting point for stories. Her handbag can be described as a “memory space” she kept carrying around. The angels can be seen in Figure 2.

Discussion

The participants showed efforts to maintain and create social roles and identities despite their diminishing skills and a confining environment. Yet dementia is no reason to lose one’s identity. The relationship of occupation and identity that has been formulated in occupational science (Christiansen, 1999; Laliberte-Rudman, 2002) is thus further strengthened in the present research.

Figure 2: Mrs Mischke’s angels

The adapted narrative-in-action approach offers an innovative way to show that narratives and occupations in transaction are used to create meaning, which leads to a sense of self and identity from the perspective of the participants with advanced dementia. According to Ricœur (1988), people create images through action and narratives that are related to identity. While acknowledging that there is a difference between the “the self-as-narrative and self-as-lived”, Mattingly (1998, p. 118) described how actions and stories told about actions are interwoven and play a part in a larger, unfolding narrative. Actions can thus provide an accessible vehicle for communicating, negotiating and even reflecting upon self-identity.

On the one hand, a narrative approach is a useful way to better understand a person’s struggle to create meaning and continuity. On the other hand, it also highlights the discontinuity in relation to identity and cognitive disability. Aspects of identity that ensure sameness over time and those that encompass discontinuity can both be revealed by a narrative approach (Mattingly, 1998), such as in the example of Mrs. Bacher being a coffee sister.

Apparently trivial occupations were loaded with symbolic meaning. Close relatives, but also other residents, played an important role in enabling identity work. The understanding of occupation as very cognitive and individualistic may even contribute to stigmatizing people with advanced dementia, whose cognitive skills are declining.

Filling the gaps through action, compensation and cooperation

The participants performed their stories, supported the act of storytelling with objects, and accompanied them with sounds and gestures. However, there were still “gaps” in the narratives that needed to be filled with different strategies. All participants used mechanisms to compensate for their cognitive impairments. Thus they used objects as anchors and triggers while performing their enacted narratives, such as in the case of Mrs. Mischke. In the key situation with her daughter, they co-create the narrative of Mrs. Mischke, how she sees herself and has been seen by others in the context of her life story. This happens not only by telling the “shared story”, but by acting in the situation. The use of objects such as handbags by women with dementia has already been explored and related to identity (Buse & Twigg, 2014), but not in the transaction of action, narrative and identity.

As shown in Mrs. Bacher’s story, the use of repeated stories was a common mechanism. People with dementia repeatedly use accessible narrative elements that are important to them to express their identities and to compensate for their inability to create a complex narrative (Örulv & Hydén, 2006). Mrs. Bacher used the repetition of stories with different plots and endings and parts of biographical episodes to express her current state of well-being. Repeated stories should therefore not be interpreted as “something from the past”, but be recognized as a means to communicate actual needs and to express one’s current state of well-being.

Exploring the perspective of older people with dementia using narrative-in-action

The contribution of this paper is to illustrate the perspective of people with moderate and severe dementia themselves by using their spontaneous enacted narratives. These are neglected in most research as already criticized by Hydén (2013). This study gives voice to a group of people who are underrepresented in research and are confronted with stigma and prejudices. Interpreting the behaviour of people with advanced dementia is a challenge. I agree with Hammell’s (2009) criticism when she claims that some assumptions of occupational therapy (and occupational science) may be ableist. Occupational science needs a more inclusive and authentic understanding of these processes, also in vulnerable groups.

These groups require the use of methods and analytic approaches that are adapted to their needs and capacities. Narratives of people with advanced dementia need more dialogical co-creation and also co-performance as well as an awareness of the symbolic meaning of action. The social persona, as Sabat (2001) called it, is dependent on co-creation with others. People with moderate and severe dementia are more vulnerable – they need partners who are able to fill the communicative gaps in order to (per)form an understandable story. Meaning related to action can be read and interpreted by other actors (like next of kin or staff) in the cultural context of the action. Especially with people who rarely speak, the contribution of decoding the meaning of observed occupations is a valuable means to understand them and meet their needs.

Future Research and Practice Implications

This study shows how the application of the narrative-in-action approach is a promising approach for occupational science to explore the experiences of people with dementia. It helps to better understand how individuals construct meaning in a certain situation. It also contributes to grasping the social, cultural, and even historical dimensions in the narratives that emerged from occupations. Its strong theoretical grounding in narrative theory leads to a more in-depth understanding of how meaning, occupation, and identity are intertwined. The function of occupation in constructing individuals’ identity is also relevant for people living with other cognitive impairments and should be explored further. Gender has an essential impact on identity and occupation, as in the example of being a coffee sister (Mrs. Bacher) and the use of gendered objects like handbags (Mrs. Mischke) and should get more attention in occupational science research.

Moreover, research should also look at another level. Based on my observations, one could speculate that narrative structures—in Bruner’s terms “narrative cognition” —are preserved over a long time, even in cases of advanced dementia. The concept of “narrative cognitive function” (Bruner, 1986, p. 11) is promising for further research because of its possible contribution to a more authentic and thus more positive understanding of people with advanced dementia.

The results of the study, rooted in occupational science, may serve as a theoretical basis for psychosocial interventions that use biographical elements and identity in relation to action. Doing so requires understanding of the way people with dementia break with the linear chronology and temporal conventions of verbal narratives, requiring others to use their pre-understanding of the symbolic dimension of action and offer meaningful occupational opportunities. For example, in dementia care, awareness of the symbolic dimension of routine care occupations such as eating, drinking, and getting dressed might serve as a means to enhance well-being and strengthen personhood and identity. However, interventions that use meaningful occupation as effective components (Möhler et al., 2018) should not be used in an oversimplified way.

Conclusion

This paper contributes to occupational science by revealing the transactions of identity and sense of self, occupation and narrative even in people with advanced dementia. The participants used narrative elements and meaningful occupations to maintain and construct aspects of their identities, even those with high levels of cognitive impairment and problems with verbal communication in the restrictive environment of the LTC settings. Seemingly trivial occupations, such as going for a walk in the park, were loaded with personal meaning.

This study is the first known to the author that—using a narrative-in-action approach—sheds light on the creative strategies employed by these people. Further use of this analytical and theoretical framework in occupational science is recommended, especially with vulnerable groups. “Narrative cognition” may long be preserved in people with moderate and even severe dementia, but this needs further research. Consequences for the practical work of dementia care may include incorporating meaningful occupation within the daily routine of long-term care facilities and addressing the remaining resources of people with dementia. Relatives should be involved as translators of actions and their meanings, and act as facilitators of identity work in dementia care.

The focus should be put on detecting symbolic meaning and interpreting a situation, rather than explaining odd behaviour as symptomatic of dementia. Instead of focussing on deficits, occupational scientists and those providing care should make visible what people with advanced dementia can still do.

Disclosures

No potential conflict of interest was reported by the author.

Acknowledgements

I thank the participants, the next of kin and the staff in the two organisations that made the study possible. This study was conducted as part of a doctoral thesis at the Institute for Palliative Care and Organizational Ethics at the Alpen-Adria University Klagenfurt. It was supervised by Assoc. Prof. Elisabeth Reitinger and Assoc. Prof. Katharina Heimerl. Thank you to both for constructive discussions and supervision. Thank you to Ton Satink and Sissel Alsaker for discussion of the narrative-in-action approach. The University of Applied Sciences Wiener Neustadt supported this study.

ORCID

Verena C. Tatzer http://orcid.org/0000-0003-2564-3259