A complex reminding: The ethics of poetry writing in dementia care

Introduction

“Having their words written down is empowering for people with dementia, it affirms their dignity and give an assurance that their words still have value.” said the British poet John Killick (1999, p. 49), who for years has organized poetry groups for people living with dementia, and who has published several books on the subject (Killick, 1997, 2013, 2018). That the vocabulary is reduced, and that language slowly disappears, does not mean that people with dementia have nothing to say, although they may need help getting started. Language problems in people with dementia are often assumed to be linked to memory failure, and thus, also to loss of identity. However, this assumption is problematic, because memory is a complex phenomenon. The American gerontologist Anne Davis Basting (2009), in her frequently cited book Forget Memory: Creating Better Lives for People With Dementia, distinguished between two main ways of defining memory. One definition refers to the individual’s ability to bring the past into the present, which means that memory is regarded as a personal capability. Because memory is important for our life story and thus for the identity, memory loss is often perceived as a threat to identity. However, according to another definition, memory is both personal and social, and thus, the “self” is relational. In connection with this second definition, Basting (2009) stated that “[t]o forget that is to ignore one of the best ‘cures’ for memory loss – creating a net of social memory around a person whose individual control of memory is compromised” (p. 161). Organizing poetry groups may be one way to create such a net. According to Basting (2009), we need to introduce complex stories of dementia and “open avenues for meaning making” (p. 164) that understand and take into consideration the social and relational aspects of memory and the self (Basting, 2009; Brockmeier, 2014). This means creating possibilities for persons with dementia to express themselves to others and themselves in varied ways, which also implies countering stereotypes of people with dementia.

Of particular interest to our work on poetry and dementia is the long-standing work of Swedish psychologist Lars-Christer Hydén (2017) that calls attention to the remaining linguistic capabilities of persons with dementia although the narrator is challenged, and the stories appear fragmented and repetitive. Hydén emphasized how persons with dementia and their caregivers engage in collaborative storytelling practices that can sustain and express the self. In his work, Hydén (2017) argued that we need to think in novel ways about storytelling and dementia: “Keeping to the traditional and taken-for granted narrative norms risks excluding stories without a closer look at them, and thus losing the possibility of discovering something important in and about these stories” (pp. 197–198). Hydén (2017, p. 2004) is inspired by psychoanalyst Theodor Reik, and his concept “listening with a third ear” which implies listening beyond the content of the tellings, emphasizing bodily expressions, gestures, rhythm, prosody, and the poetic qualities. Hence, linguistic sensitivity is crucial.

Since the late 1980s, poetry intervention in dementia care has gradually increased in content and scope (Swinnen, 2016). These interventions seek in various ways to create poems by editing individual or group conversations with persons with dementia. In addition to giving voice to the “voiceless,” poems based on words from persons with dementia may function as “a medium for hearing and heeding their experience” (Zeilig, 2014, p. 160), and thereby also improve the general understanding of people with dementia (Aadlandsvik, 2008). An increasing number of research have indicated that persons with dementia participating in art activities, show improvements in terms of communication, memory, listening, concentration and quality of life (Gregory, 2011; Petrescu et al., 2014; Wexler, 2014; Young et al., 2016). Some studies also show that art intervention may contribute to more meaning, less isolation and reduced stigmatization for people with dementia (Bienvenu & Gay, 2017), and that they still have a drive for personal growth (Clark-McGhee & Castro, 2015; Petrescu et al., 2014). Both Anne Davis Basting and the poet Gary Mex Glazner have developed intervention programs using literature or poetry, aiming at developing meaningful activities, improving quality of life, and reducing further cognitive impairment among persons with dementia. In both these programs, called Time Slips (Basting, 2001, 2009) and Alzheimer’s Poetry Project (Glazner, 2005), participants are arranged in groups led by a facilitator, they use improvization as an important strategy, and participation does not rely on memory. These programs are well established, and have received international attention. Swinnen, who has used these programs in her own research, reported increased activity and more improvization among participants during the sessions (Swinnen, 2016; Swinnen & de Medeiros, 2018a, 2018b).

According to Killick (1999), no special skills are needed to successfully organize poetry groups for persons with dementia. However, he gives some advises on qualities he thinks are necessary: “[y]ou do not have to do anything special or be anyone special. You do, however, have to develop the qualities of empathy and self-effacement and to learn to keep silent” (Killick, 1999, p. 49). In a review of Killick’s (2018) latest book, James Woodward (2018) elaborates on such qualities as follows: “Fundamental to this is the capacity to listen carefully and to be adventurous in stimulating exchange in conversation”. A systematic literature review from 2016, which included studies involving various forms of art activity for persons with dementia, showed that a friendly atmosphere, where the participants felt respected and appreciated, had an important impact on how they responded (Young et al., 2016). Hence, ethical sensitivity is important.

Although the literature has shown that poetry and story-telling groups seem to be well received in practice and may have positive implications both on the persons with dementia and those in their environment, more research on such meaning-making activities is needed. As Swinnen (2016) argued, there is a lack of acknowledgment in the research literature of the benefits and value of poetry as a specific genre. Swinnen herself has researched poetry interventions in dementia with an emphasis on the performative aspects of poetry as play and improvization (2016, Swinnen & de Medeiros, 2018b). However, there has been less investigation into the products of poetry interventions in dementia care. In this article, we want to add to the ongoing research by examining poetry as a genre through a close reading of poems from a poetry writing project in dementia care based on the everyday language of persons with dementia. We argue that this involves both an ethical and a linguistic sensitivity that might give an increased understanding of resources that might be found in conversations with persons in early stages of dementia. Thus, the aim of this article is to investigate how linguistic and ethical sensibility can illuminate the poetic possibilities of the everyday language of persons with dementia.

Theoretical framework

In this section, we present a theoretical framework that gives a grounding for the poetry project, and perspectives that help illuminate the findings and the subsequent discussion. The framework consists of the following two perspectives: (1) writing and reading poetry as a linguistic and ethical practice, and (2) honoring the stories and voices of persons with dementia as a necessary part of a narrative citizenship in dementia care.

Our view of poetry is inspired by American poet Gregory Orr (2002), who argued for the centrality of the personal lyric throughout history and across cultures. For Orr, poetry is not something for the chosen few, but is connected to our being in the world, and the need for ordering through imagination. The personal lyric—meaning poems with an “I” that relates to an autobiographical experience—orders and dramatizes the self’s situation in the world, and makes it possible for the self to enter the “shared world of language and connection to other selves” (Orr, 2002, p. 42). Thus, poetry is concerned with expressing inner feelings, of restabilizing the self and making connection with others through poetic language. Although Orr’s argument is tied to the process of crafting poems through writing, we find his thoughts on poetry and the self illuminating when we are trying to understand the importance of the poetic qualities of the everyday language of persons with dementia. According to American poet Wendell Berry (1990), a poem “exists at the center of a complex reminding” (p. 88). By attending to the poetic qualities of the language of people with dementia, we argue that what can be found is a complex reminding of what is still there. Not least, poetry might open our eyes to how even smaller fragments of spoken words are imbued with meaning and significance. Of particular interest to our project is Gregory Orr’s argument of the close relationship between the personal lyric and narrative. In his work on dementia and collaborative storytelling, Hydén (2017) claimed that persons with dementia who still have linguistic capabilities tend to parse “longer autobiographical stories … into small units centered on specific events” (p. 198). This is a precise description of why we believe that poetry might be a productive way of looking at the everyday language of dementia. According to Orr, a specific version of the personal lyric is what he termed a “lyric story” which is closely related to narrative, but where the lyric story concerns only two to three characters, and where the story in the poem is centered on “an image, a scene, a thing or an event” (p. 98). Such a view might open up a different perspective on many tellings of persons with dementia, where they might be seen as smaller poems emphasizing significant events and images, instead of being seen as fragmented, partial, or broken narratives. A final aspect we would like to highlight from Orr’s argument is how poetry is connected to identity through its potential of laying claims to experience: This has happened to me, this is part of who I am, this is still important to me (p. 100). Of particular interest to this line of thought is the argument of literary scholar Charles Altieri (1998), when he claimed that poetry allows us to “explore modes of ethos involving psychological states and inviting affective responses capable of challenging the models of agency that dominate moral discourses” (p. 273). However, promoting the practice of co-creating “smaller poems” together with persons living with dementia takes ethical sensitivity on behalf of the promotors, to strengthen the experience of identity and agency.

The practical poetry project and the research methodology

Findings: The lyrical qualities and the importance of the poems

To give an understanding of the lyrical qualities of the poems, it was important to present them as whole poems. In the following, four different poems provide insight into the various thematic contents, as well as the lyrical qualities that can illuminate important aspects of the richness of the material. In addition, the experiences of the participants, family members, and health care staff are brought into the presentation of the poems, along with the theoretical perspectives and previous research. We start with one of the many poems by Viktor, the participant whom we quoted at the start of the article, who expressed his surprise at having become a poet. The following poem is the result of an extraction of a longer telling where nothing else was changed from the original telling, apart from dividing the telling into stanzas and introducing line breaks:

I got the rhythm of the dance early into my body

Reading the poem above, we argue that it has poetic and literary qualities; qualities that are highlighted by the poetic form. Of course, the form is something the group leader and the poet in the project has achieved in writing the narrational fragments as a poem with stanzas and line breaks. As literary scholar Jonathan Culler (2008) argued, writing something as a poem “brings into play a new set of expectations, a set of conventions determining how the sequence is to be read and what kind of interpretations may be derived from it” (pp. 188–189). By closely listening to the transcripts, adding line breaks, and reading them as poems, we emphasized the quality of the language and images that were not visible or obvious in the ongoing conversation. And this was a revelation for us when we worked with the transcripts of the conversations: We were astonished at how many poems could be found in the transcripts.

Viktor’s poem also displays considerable amounts of humor, a quality this poem shares with several other poems. Many of the humorous poems end with a punchline, but in this poem, Viktor concentrates the humor around a small detail: “When she saw that pretty boy”. Viktor is presenting his aunt’s astonishment at seeing such a pretty baby that inspires her decision (immediately!) to name the boy after her diseased son. Furthermore, he also gets to introduce himself as a ladies’ man, which he still was the day we met in the poetry group (which was also confirmed in interviews with both his family member and the health providers). And then the last stanza where Aunt Hanna lifted him in her arms and transferred the rhythm into his body that is there until this day completes the poem. Viktor was big and strong (like his aunt) with a great love for music and dance that was mentioned several times during our meetings. This poem becomes a mythical, creational poem about himself; where his musicality and name are transferred to him from his deceased uncle. It becomes a poem of identity, belonging, and connection to the northern part of Norway that Viktor came from, and to the past from the situation here and now. Furthermore, it is a poem where Viktor is truly staging himself in front of an audience through the details and the humor. It is a poem that shows the performative aspects and the social actions that are always at play in narrations (Chambers & Montgomery, 2002). And it is a poem that displays the creative linguistic distillation in Viktor’s storytelling that become visible in the poem.

Above, we argued for the performative character of Viktor’s poem, but the poems also have a performative dimension in the way they inspired and influenced the other participants. The next poem is a direct response to the poem above, in that the narrator, Dagny, a woman in her late 80s, picked up on the fact that Viktor’s uncle died of tuberculosis, and uttered a few sentences that became the following poem:

Ellagulla

In Scandinavian countries, poetry (dikt) comes from the German word dichtung, meaning condensation, or densification. Many of the poems in this project shared the quality of being a condensation; glimpses of important episodes of lived life that are shared through some small key features and visual images. Wendell Berry’s (1990) claim that a poem “exists at the center of a complex reminding” (p. 88) is a productive way of looking at what can be found through an acknowledgement of the poetic qualities of the language of persons with dementia. According to Berry, the poem reminds the poet and the reader of the qualities of language, of what is remembered or ought to be remembered, of creatures and structures and places of the world—and what voices get to be told. In the poem above, we hear glimpses of the everyday life in a fishing community on the northwest coast of Norway in the 1930s, as well as a significant memory from Dagny as a seven-year-old girl. Thus, this is also a poem of identity. We experienced how this poem became important for Dagny through the reading in the group, confirmed by the field notes and the interviews with the health care workers. The latter revealed also that Dagny read this particular poem aloud on several occasions, one time in a church during a concert with a choir that she was a member of. Furthermore, this poem underscores Orr’s argument that poetry is a re-description of reality in at least two ways. First, the poem is a re-description of the woman to the rest of the group by displaying fragments of a life story. Second, the poem itself represents a poetic re-description of the local landscape to the reader through the portrait of the deceased young girl. After the group meeting ended, the four authors of this article drove to see the small island and the graveyard on the mainland, looking for the grave of Ellagulla. For us, the last line of the poem gave a compelling movement where the coffin was rowed from the island to the mainland, out of the story, and into our consciousness.

When we analyzed the observation notes from the poetry groups, held together with the interviews with the attending staff and family members, we saw that the poems and the practice of attending a poetry group can serve as a complex reminding among the participants, too—of possibilities, of shared community, of remembrances and participation. One telling example of this happened in one of the groups when we read aloud the well-known poem “The dream we carry” (Det er den draumen), by Norwegian poet Olav H Hauge. Not all poems that we read in the groups brought forth a reaction, but this time, one of the participants, Jenny—an older woman in her late 80s—responded to the group leader’s reading, and started reading it aloud herself right away, making the group leader withdraw from the reading, and letting Jenny read it for the group. When she finished, she burst out: “What a poem! This is how it is, we all have this dream that something wonderful should happen, that it needs to happen!” The poem and Jenny’s enthusiasm opened up for a reflection in the group on the dreams of their youth, as well as their dreams of today, which became several poems. After the group had finished, the participants went around and shook each other’s hands afterward, thanking each other for sharing. A man who had very limited language exclaimed, “This was so big!”, indicating with his arms how much this had meant to him, when asked about the group afterwards by the staff. Jenny concluded the group meeting by stating: “This was something else than bla, bla, bla!” (meaningless babble). Later, in the focus group interview, the daughter of this woman told that her mother, who never had read poetry in her whole life, had read Hauge’s poem aloud several times, weeks after the group meeting.

Similar experiences were made in all the groups where the meetings became solemn occasions. In particular, the reading of the participants’ own poems created a special atmosphere. The field notes emphasized how many laughed when they heard the poems read aloud, most were visibly proud, some got tears in their eyes. When asked what they thought of the poems, they all expressed that these were their poems; and they confirmed that it was their own words and images. Even if some of the participants forgot what had happened in the group immediately afterwards, they lit up when they heard their poems read aloud.

The two previous poems are examples of a “lyric story” in the way they involved a recollection of past events in small narrations. However, the next poem has a different configuration. This poem is one of the poems that was created as a response to the reading of the poem “The dream we carry” (but in another group), by Einar, a man in his early 80s:

I guess I have had many dreams

Throughout the years

According to Orr (2002), a personal lyric has the power to include the pain in the story through expression instead of suppression: “The personal lyric says to the self in its suffering: ‘I will not abandon you. Nor will I ask you to abandon yourself and the felt truth and particulars of your experience’” (p. 29). We believe that Orr’s argument provides plausible anticipation for how Einar reacted to the poem and its reading in the group, and it underscores an ethical aspect of poetry writing among persons with dementia, namely, the possible validation of their present situation by confirming their previous lives.

In our analysis of the poems and the group settings, one significant finding is the increased interaction among the participants, mirroring Orr’s (2002) claim that poetry involves a connection between selves. In the poetry group that Einar was part of, we saw how he and Viktor developed a relationship and friendship that previously had not been there. One of the attending staff explained in the interview how they were opposite characters, but through the poetry group, they started talking to each other and sitting next to each other at lunch. And it was an observation of an exchange between Viktor and Einar regarding the poetry group that became the vignette, and the starting point for this article.

The next poem further exemplifies the relational aspect of the poetry writing practice. The poet is Jenny, the woman who read aloud “The dream we carry”:

I have come to respect life

Through everything I have experienced

And through what I have learnt

The observations of the groups emphasized that the participants experienced their attendance as meaningful. In the focus groups with family members it appeared that they had somewhat different perceptions of what the groups had meant to their loved ones. Some relatives were surprised at the groups’ significance, but others were more reluctant. This can be seen in relation to the fact that although some participants talked a lot about their group experiences, others did not remember that they had participated. Poetry groups are not necessarily a solution for all people with dementia, as the disease develops differently depending on the diagnosis. However, one should not exclude that those who did not remember that they had been present may have enjoyed the participation in the moment.

The poems we showed above exemplify how poetry can function as part of a narrative citizenship. The poetry group amplified the voices and expressions of the participants, gave them an audience, and created opportunities for the sharing of each other’s tellings. By slowing down, listening to the transcripts and attending to the qualities of the everyday language of persons with dementia, we could highlight qualities in the expressions that we do not attend to or recognize in the flow of everyday conversations. Also, the fact that the poems were written and could be read again and taken back to family members can be seen as part of a narrative citizenship.

Moreover, we highlight how the poems can serve as narrative citizenship on a larger scale. In advocating for a narrative literacy, Baldwin also stressed how alternative narratives can “resist the cultural obsession with loss and decline” (2010, p. 251), an argument that the likes of Dupuis et al. (2016) advocated when they claim that artistic expressions can involve a reclaiming of citizenship for persons with dementia. Knowing that dementia, along with cancer, is the most feared disease in many Western societies—and among older adults, the far most feared (Alzheimer’s Association, 2014; Bystad et al., 2016)—coupled with the fact that mainstream media portray dementia in predominantly negative ways (Peel, 2014), there is a need for an alternative language and other stories of dementia (George, 2010). Inspired by the quality of the poetry that had been made in the writing groups, along with the enthusiasm that was created, we believed that the poems deserved a larger audience. The city where the project took place is renowned for its literature festival, which has always been concerned with “freedom of speech” and “marginalized voices,” and we thought it would be fitting to present the poetry at the festival. The festival organizers agreed, and the poetry and the project were presented to a full house with many of the poems read aloud by a well-known professional actor, and with most of the participants in the front rows. During the festival, we collaborated with the local bus company in getting all the city buses to present the participants’ poems on the buses’ rear and in the interior.

According to philosopher Judith Butler, there is a fundamental problem in our society how some people are framed as already lost, making them invisible and making their lives not grievable. Although Butler (2009) was writing in the aftermath of 9/11, we found her thoughts about what makes for a grievable life highly relevant to dementia when she wrote: “it is only by challenging the dominant media that certain kinds of lives may become visible or knowable […] the tacit interpretive scheme that divides worthy from unworthy lives works fundamentally through the senses” (p. 51). She argued that poetry is a way of transmitting breath into words where the other is given over to another in the form of an appeal. Presenting the poems at the literature festival and on the city buses is one attempt at making a larger audience experience what can still be found of resources in persons with dementia. The feedback from the participants, health care staff, and family members was very positive, as was the feedback from the audience in attendance. And perhaps most significant was that the festival organizers agreed that the poems of persons with dementia belonged in a literary festival that emphasizes freedom of speech and marginalization. We argue that projects like this show the need for new arenas for participation, for a narrative, and a cultural citizenship. Being able to be part of society and being visible with dementia might open pathways for other people to live meaningful lives. Furthermore, by opening up arenas for persons with dementia, we can also give a nuanced perspective on dementia to the rest of society.

Closing discussion: A complex reminding

The aim of this article was to show how a linguistic and ethical sensibility can illuminate the poetic possibilities of the everyday language of persons with dementia. In the analysis above, we argued that the poetic possibilities of persons with dementia can serve as “a complex reminding” (Berry, 1990). The poems showed that persons with dementia are “linguistic agents” (Swinnen & de Medeiros, 2018a) and that the often fragmentary everyday language of the participants has poetic qualities. However, these poems are not as Killick (1999, 2018) and others have claimed regarding the language of dementia, full of original metaphors, similes, or unfamiliar syntax showing a language that is inherently poetic. Swinnen (2016) has criticized such a view for risking being overtly romantic and “perpetuating the troublesome connection between ‘madness’ and creativity” (p. 1379). The poems in our groups are more poetic through an everyday language that does not try to be “poetic” but show small glimpses from lived life through details, images, and expression that we have highlighted as poetic. Many are close to what Gregory Orr (2002) terms “lyric story” in their insistence on a specific memory, situation, or state of mind. As Mark Freeman (2017) argued: “It may be that, in certain times and places, narrative is the way to go, while at other times and places, poetry is. It all depends on the lives and cultures in question” (p. 149). In our reading of the various poems, we claim that poetry can be a productive language for finding nuances and resources in the everyday language of persons with dementia.

In addition to the poetic qualities, the practice of poetry writing concerns a complex reminding in what the poems display, through an ethics of representation. By showing the potential in the fragmentary, in the glimpses and snapshots that are still there, we argue for the ethical dimension of poetry writing in dementia. It shows the possibilities of other narrative resources (Frank, 2012), and it underscores how the poetic can challenge models of agency (Altieri, 1998).

This last point is also closely linked to narrative citizenship. The poems and the poetry writing can serve as a complex reminding in what is possible by amplifying the voices of the participants, and establishing a dialogue between them, giving opportunities for contribution, belonging, community, and voice. In addition, we claim that the poems can serve as a form of narrative citizenship through an ethics of reading, by making lives visible (Butler, 2009). Concluding, we argue that poems can serve as passports into narrative citizenship when narrative becomes fragmented.

We would like to end this article by giving the last words to one of the participants, which also can serve as a complex reminding. It underscores Norwegian writer Lars Saabye Christensen’s (2018) point that the task of poetry is to map, even the smallest spots and locations into our mind. And we would like to add: into our culture. The poet is Dagny, the woman who told about her godmother’s funeral at the island. Here, she returns to the small island once more:

The willow