The meaning and experience of hope by people living with dementia as expressed through poetry

Design

A qualitative design was used to explore and make sense of the shared meanings and experiences of hope when living with dementia.

Recruitment and participants

The inclusion criteria for participants were a diagnosis of dementia (of any subtype) and the capacity to write a poem in English about hope (with or without support from family/friends). Extensive exclusion criteria were not imposed due to the explorative nature of the study.

Many participants were recruited through online social media platforms. They volunteered their participation in response to adverts placed on Facebook, Instagram, Twitter and The UK Network of Dementia Voices website. Others were recruited through local voluntary dementia groups in and around Hull, UK; activity coordinators for the East Riders, Time and Placers, and the Dementia Advisory Group were asked to inform their members about the research. Interested members were directed to contact the primary researcher or gave verbal consent for their emails to be shared with the researcher.

While there are no standardised guidelines for participant numbers when using poetry as data, 10–50 participants have been recommended for “small projects” (student projects) when using participant-generated text as data. The justification for this alludes to the prevention of an overwhelming amount of data while having enough data to demonstrate patterns of meaning (Braun & Clarke, 2006: p. 50–51). Thus, data collection took place between July 2021 and March 2022 and ended when 31 participants were recruited.

Procedure

Promotional posters and a video were distributed online and among activity coordinators of local voluntary dementia groups to share with their members. The posters and video detailed that participants could ask others to help them participate in the study and that only poems in the following styles would be accepted:

• Acrostic poems: where the first letter of each line spells out hope.

The inclusion criteria for poems were adopted from Bishop and Willis (2014). They highlighted that people may become preoccupied with notions that poetry is a complex art requiring specialist knowledge and may therefore become discouraged from participation in poetry-based research. They found that providing guidelines for two specific poetic styles mitigated this potential barrier, with the addition of freestyle poems encouraging people of mixed abilities to take part in the study. Thus, this guidance was adopted for the current study so that people living with dementia with varying cognitive and literacy abilities were supported to write their poems on hope.

Participants used a link available on the posters and video to submit their poems on an online submission platform (created with Online Surveys). On this platform, participants were prompted to download the participant information sheet, with an easy-read version available. Participants could also download an instruction sheet with further details about how to write poems using the three accepted poetic styles. Participants could submit up to three poems per person. A group of participants could also submit a poem written together. Details of their right to withdrawal, anonymity and data storage were all included in the information sheet. Participants could not submit their poems and demographic information until they confirmed that they had read the information sheet and provided informed consent. Some participants opted to email their poems to the primary researcher after reading the information sheet. These poems were included in the study once participants had signed and returned a consent and demographic data form via email or post. Participants were asked if they would like their poems to be included in an anthology of submitted poems at the end of the research (with or without their names). Their decision did not affect the anonymous inclusion of their poem in the study. Consent was given for 21 of the submitted poems to be included in the anthology: https://www.canva.com/design/DAFBplNp6RU/rXxA7daEkhRTHIjZrQiXkw/view?utm_content=DAFBplNp6RU&utm_campaign=designshare&utm_medium=link&utm_source =publishsharelink.

Data analysis

Submitted poems underwent reflexive thematic analysis (TA) (Braun & Clarke, 2006, 2021), an analytical choice governed by a number of rationales. Reflexive TA provides clear analytical guidelines that are applicable to textual data, such as poetry (Braun & Clarke, 2006). It involves the analysis of patterns across participants, proving a way for shared meaning and experiences of hope to be interpreted (Braun & Clarke, 2006, 2021). Reflective TA is theoretically flexible, making it appropriate for a range of research philosophies. The variation of reflexive TA used in this study was underpinned by ontological realism and epistemological relativism, taking a philosophical framework of critical realism. In line with the explorative nature of the study, an inductive orientation to data was taken. Meanings were explored latently as participants used stylistic poetic techniques to convey underlying meaning, however, the focus of meaning remained semantic where appropriate.

Below are the steps that were taken to analyse the data, as outlined by Braun and Clarke (2021). This was a non-linear, iterative process that facilitated a rigorous analysis.

(1) Familiarisation with the data: the primary researcher repeatedly read through all the data and wrote reflective poems in response to each submitted poem.

Researcher reflexivity

The primary researcher engaged in active reflexivity to consider how personal values and experiences interacted with data analysis. This involved a disciplined practice of critically interrogating decisions and the effect this could have on the findings and the epistemological soundness of the research. A research journal, reflective practice groups, poetry and regular supervision with two qualified clinical psychologists and researchers were the main tools used in this endeavour.

Overview of poems and participant demographics

Overall, 33 poems were submitted, of which four were excluded as they were not written by people living with dementia. Of the 29 poems included, 3 were acrostic, 8 were sense and 18 were freestyle. One of these poems was written by a group of four participants, another one was written by a different group of four participants and two participants submitted three poems each. The remaining 21 poems were written by 21 different participants. That makes a total of 31 participants (22 female and 9 male) included in the study. These participants were between 51 and 70 years old and had been diagnosed with dementia between 2.7 and 7 years. Types of dementia reported were Alzheimer’s, Vascular and Mixed. All participants resided in the UK and lived in their own homes. Other demographic data requested were current/most recent occupation and ethnicity, although an overview of this cannot be provided as they were infrequently reported.

Overview of themes

There were three main themes: (1) “hope is light in the darkness”, (2) “poetry gives voice to experiences of hope” and (3) “peers uphold hope and cast away the darkness” (see Table 1 for a thematic map). Unique narrative points of each theme are presented in Table 1. To avoid the addition of structural complexity at the expense of analytic depth as warned by Braun and Clarke (2021), these are not structured as subthemes. Instead, they are presented as narrative points to highlight their significant contributions to the overall narrative of their respective theme.

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Table 1.

Thematic overview and significant narrative points.

Theme	Central organising concept	Narrative points
Hope is light in the darkness	The function of hope when living with dementia	The darkness arises
		Where will I go from here
		Hope spotlights the important things
Poetry gives voice to experiences of hope	The capacity of people living with dementia to have hope	Hope is a slippery thing
		Poetry sheds a light on the experiences of hope
Peers uphold hope and cast away the darkness	The role of others in fostering hope for people living with dementia	Seeing me as I want to be seen
		Creating hope together

Theme one: Hope is a light in the darkness

Hope is positioned as a uniquely functional resource (a light) that facilitates coping in the face of challenges that arise when living with dementia (the darkness). Some of the challenges named were the sense of limited time that the terminal and progressive nature of dementia creates, as well as cognitive and physical difficulties. “The darkness arises” as these challenges interfere with established routines and goals, casting a shadow on what is still possible and emphasising a sense of loss and despair.

Poem Six

With the “darkness” casting a shadow over previous goals, people felt a great sense of uncertainty about their future. Some people’s outlook on what is possible and what they are capable of grows smaller, so much so that life starts to look bleak and meaningless. Some participants began their poems by questioning whether it was even possible to have hope at all, suggesting that being diagnosed with dementia is a barrier to hope.

Poem Four

In the face of the darkness and uncertainty, it was hope that many participants longed for. They felt that hope allowed them to both accept and adapt to the challenges of living with dementia, shedding a light on what was important to prioritise. Hope, therefore, did not eradicate the darkness. Instead, it acted as a spotlight that brings to attention what is now possible despite the presence of the darkness. As such, “hope spotlights what is important” based on what can realistically be achieved in the context of dementia.

Poem twenty-three

Hope was also conceptualised as a driving force that energises and facilitates active movement towards these newly identified and reprioritised positive possibilities.

Poem eighteen

Without hope, living with dementia is represented as being engulfed in the darkness. In such a case, a person may be stuck in the “where do I go now” position where they are overwhelmed by uncertainty with no clear sense of direction as to what is important or what is possible.

Poem eighteen

The relationship between the three narrative points is non-linear, nor are they distinct unitary positions. That is, people can move back and forth between these positions based on their ever-changing daily challenges and the resources available to them to foster their hope.

Poem Twenty-Five

Theme two: Poetry gives voice to experiences of hope

Participants alluded to the idea that “hope is a slippery thing” that was difficult to define. They often questioned where hope was felt, how it could be obtained and its existence. This elusive and mysterious air around hope seemed to foster a hopeless discourse around living with dementia, as it was difficult to have hope when hope couldn’t be defined.

Poem Twenty

Poetry seemed to play a unique role in allowing people to clearly conceptualise the otherwise elusive nature of their capacity for hope. Poetic devices such as similes, metaphors and imagery provided a way for hope to be conceptualised beyond what is possible with literal language, providing a gateway through which participants could envision and communicate their experience of hope. Through these poetic devices, participants clearly listed experiences of hope and highlighted their capacity for hope. People equated hope to the mindful enjoyment of daily life, nature and food.

Poem Twenty-One

People also noted that hope is felt in the celebration of daily achievement. Hope is also experienced when people recognise and engage with their personal strengths, capabilities and hobbies such as creativity and travelling, and note that hope spotlights the ways in which they can still engage in and enjoy these personal interests.

Poem Twenty-Two

Notably, people also make mention of hope residing in future possibilities, as they describe an ability to practice acceptance of the prognostic realities of dementia while hoping for a good quality of life.

Poem Six

Hope for the future went beyond the self, with people highlighting their ability to hold onto hope for a better future for their families and the world. As such, there was so much capacity for hope when living with dementia, both residing in the present and the future, and about the self and others.

Poem Twenty-Seven

Theme three: Peers uphold hope and cast away the darkness

This theme highlights that the action of others can either block or foster hope for people with dementia. Some participants expressed that people with dementia are positioned in society as hopeless and incapable of having positive experiences and that these unhelpful narratives acted as barriers to their hope. Participants found it difficult to hold onto hope when others around them continued to be preoccupied with negative outlooks on their lives. These narratives feed the darkness that enters people’s lives when diagnosed with dementia, thus, making it harder to have hope and see “the light in the darkness”.

Poem Twenty-Eight

Some participants used their poems to express their personal realities of living with dementia, challenging these disabling narratives held by others. This spoke to a desire of “seeing me as I want to be seen” as participants expressed a longing for their personhood to be acknowledged and valued.

Poem Twenty-Two

The experience of being diagnosed is presented as a pivotal point at which the size of the shadow dementia casts on life is determined. Some participants highlight that the darkness can be mitigated by health professionals engaging in hope fostering discourses such as orientating toward what is still possible as opposed to being preoccupied with what might be lost when communicating a diagnosis.

Poem One (full)

Furthermore, hope was seen as something that can be created together. Specifically, positive social interaction is privileged as a catalyst for increasing experiences of hope when living with dementia. Several poems suggested that social gatherings create opportunities for having fun with family members, friends and communities. It affirms people’s capacity to have positive experiences and encourages them to seek out further pleasurable opportunities. A few people also noted that their experiences of positive social interaction include occasions where people gather to seek and share new developments about dementia as this fuelled their hopes for the future. A sense of reciprocity in caring for each other also fostered their hope, both by affirming their own strengths when they can care for their family and feeling hope through displays of love when they are cared for by loved ones.

Poem eight

Limitations and future research

Participants rarely provided details of their ethnicity on the demographic data form. As such, there is a lack of understanding of the diversity of recruited participants and whether findings are transferable to a range of ethnic identities. This is an important consideration as one of the main findings was the negative effect that stigma and hopeless discourses held by others had on the capacity for people with dementia to hold onto hope. Research highlights that negative narratives of dementia are heightened within Black and Ethnic Minority Groups, with people from these communities in the UK conceptualising dementia as “a white person’s illness” (Berwald et al., 2016: p. 11). Thus, the experience of hope is likely to be different in Ethnic Minority Groups who face increased stigma and discrimination in health care settings. On the other hand, people in Ethnic Minority Groups may have unique resources, with concerns about help-seeking relating to a perceived risk of compulsory institutionalisation and the desire of families to hold care responsibility (Berwald et al., 2016; Roche et al., 2021). With findings in the current study suggesting that strong family relationships facilitate hope, this is also likely to affect hope experiences. Thus, the explicit exploration of hope and dementia in Ethnic Minority Groups remain highly relevant for future research, which can support culturally sensitive hope fostering discourses in dementia care.

Additional limitations are also related to the sampling issues within this study. This study originally had a Phase Two of the recruitment processes where activity coordinators in care homes were contacted and asked to run poetry writing workshops on hope for their residents with dementia. With the informed consent for their residents, these poems would have then been submitted as part of this study. Phase Two was designed to diversify participants to include those with more moderate to severe dementia. Due to limited staff and pressures on care homes as a result of COVID-19, none of the care homes contacted had the capacity to participate in this research. As such, all participants lived in their own homes and had an average of 5 years since the time of diagnosis. The further losses in independence and increased impairment that people in later life experience may influence the experiences of hope in people with advanced dementia (Erickson, 1977; Moniz-Cook et al., 2006). The findings of this study cannot, therefore, reflect the experience of hope in those with severe dementia in supported living, and explorations of hope in people with advanced dementia remains an important avenue for future research.