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

Abstract

Background

Narratives of dementia can undermine the ability of people to live well. Positive psychology, concerned with the cultivation of personal strengths, is a model through which people’s capacity to have positive experiences can be researched. This study explored the meanings and experiences of hope, a positive psychological construct found to facilitate well-being, in people with dementia.

Methods

People with dementia submitted poems about the meanings and their experiences of hope through an online platform. The submitted poems (n = 29) underwent thematic analysis.

Findings

There were three main themes: (1) “hope is light in the darkness” encapsulated the meaning ascribed to hope as a resource that spotlights what is still possible, (2) “poetry gives voice to experiences of hope” captured the role of poetry in communicating the otherwise elusive concept of hope, and (3)“peers uphold hope and cast away the darkness” captured that participants’ hope was blocked by stigmatising views held and expressed by others but facilitated through positive social interactions.

Conclusions

People are capable of having hope in the context of dementia, with hope being a uniquely functional strength that supports wellbeing. Health professionals, family and society have a clear role in supporting people with dementia to maintain their hope.

Keywords

hope dementia positive psychology poetry stigma psychosocial interventions

Introduction

While managing the challenges associated with dementia, studies demonstrate that people can have positive experiences and live well (e.g., Cahill et al., 2004; Hickman et al., 2018; Katsuno, 2005; Pearson et al., 2022). Despite this, narratives of dementia remain focused on loss and deficit (Aquilina & Hughes, 2006; Behuniak, 2011; O’Malley et al., 2022). Dehumanising views permeate public discourses where people consider dementia as one of the most burdensome conditions of later life (Ferri et al., 2005). Counter-frames of such hopeless views are relatively absent in news and media (Hakola, 2019; O’Malley et al., 2022; Van Gorp & Vercruysse, 2012). Researchers are preoccupied with prolonging survival and slowing symptom progression, with limited exploration of how to support people to live well with dementia (e.g., Pardo-Moreno et al., 2022; Prince et al., 2013; Yiannopoulou & Papageorgiou, 2020).

These hopeless and stigmatising views are not inconsequential and play a significant role in the well-being of people living with dementia. They have been found to propagate negative self-stereotyping (Moniz-Cook et al., 2006; Scholl & Sabat, 2008), poor self-image, and experiences of discrimination (Naue & Kroll, 2009), which in turn, exacerbates feelings of isolation and reluctance to seek diagnosis, support, and participation in research (Garand et al., 2009; Mitchell et al., 2013; Patterson et al., 2018; Sweeting & Gilhooly, 1997). To improve the care, personal outlooks, and quality of life of people with dementia, it is essential to address this stigma and explore balanced narratives of dementia that capture people’s capacity to live well (Swaffer, 2014).

A framework through which alternative narratives can be explored is positive psychology, as it is concerned with cultivating personal strengths and social environments that foster well-being (Peterson & Seligman, 2004; Seligman & Csikszentmihalyi, 2000). An important concept within positive psychology is hope. Seligman (2002), credited as the founder of positive psychology, proposes that a hopeful outlook is vital for a good quality of life. Hope has been positively associated with reduced levels of depression and anxiety (Feldman & Snyder, 2005), improved quality of life (Duggleby et al., 2021) and better subjective wellbeing after controlling for variance due to self-efficacy and optimism (Magaletta & Oliver, 1999). Hope is also evidenced to be a larger predictor of lower burnout compared to resilience (Pharris et al., 2022), distinguishing it from other positive psychology constructs.

Despite robust findings of its positive influence on wellbeing, scholars and philosophers have struggled to develop a singular description for hope, with as many as 29 different empirical definitions and 32 standardised measures available (Schrank et al., 2008). Non-traditional data collection methods such as poetry have been effective in exploring complex and difficult to define concepts (e.g., Amponsem et al., 2022; Campo, 2003; Shapiro, 2004), with evidence demonstrating that poetry is particularly useful for investigating hope (Bishop & Willis, 2014).

Older adult and terminal health research provide some robust conceptualisations of hope. Older adults are thought to face threats to hope such as depleted energy, hopelessness in others, and impaired cognitive ability (Herth, 1993). However, they are able to adapt to these challenges and have a capacity for both generalised hope e.g., hopes about others and the world, and specified hope, e.g., hopes for the self (DuFault & Martocchio, 1985; Lapierre et al., 1997; Rapkin & Fischer, 1992). For those facing life-limiting conditions, hope is experienced as a resource that changes over time and allows people to affirm life and connect with their environment and those around them (Daneault et al., 2016; Johnson, 2007; Soundy et al., 2014).

While limited and often found serendipitously, there is evidence to suggest that people with dementia can also experience hope (e.g., Cohen, 1991; Cutcliffe & Grant, 2001; MacRae, 2010). There were two studies that explore this topic directly at the point of writing. Wolverson et al. (2010) explored the subjective experience of remaining hopeful in early-stage dementia. Hope was expressed as both an internal and external process that was thought to maintain well-being and self-esteem. Similarly, Cotter et al. (2018) found that hope accounts for 25% of the variance in self-esteem in people with dementia. These studies suggest that hope plays a role in maintaining well-being. However, findings from Wolverson et al. (2010) are limited to early-stage dementia, while findings from Cotter et al. (2018) are quantitative and do not offer an explorative inquiry into the experiences of hope.

Additional work is therefore needed to develop richer conceptualisations of hope in dementia, which can be used to cultivate hope fostering discourses and support people to live well. Exploring hope through poetry provides the opportunity to expand understandings beyond what has been found in previous research using traditional methods, substantiating the need for further study of hope in dementia (Bishop & Willis, 2014). Poetry has also been found to affirm the value, identity, and hope in people with dementia when used as research data (Castro & Clark-McGhee, 2014; Killick, 1999). Thus, the current study aimed to explore shared meanings and experiences of hope by people living with dementia through the analysis of participant-written poems. The following research questions were addressed: (1) what meanings do people living with dementia ascribe to hope and (2) how do people living with dementia experience hope (including facilitators and barriers to hope).

Methods

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.

• Sense poems: where poems are constructed by completing some/all of the following sentences – “hope is…”, hope tastes like...”, “hope sounds like…”, “hope smells like…”, “hope looks like…” and “hope makes me feel...”.

• Freestyle poems: poems of any or no specific stylistic choice.

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.

(2) Coding: for each submitted poem, lines that were relevant to answering the research questions were labelled with a succinct code.

(3) Generating initial themes: related codes were grouped together to formulate significant broader patterns of meaning across the data set to form initial themes.

(4) Reviewing themes: the initial themes were thought to act as topic summaries after being checked against the dataset and discussed with the research supervisor (second author). Stages four to five were repeated, and new initial themes were developed. These were reviewed as being reflective of distinct central organising concepts relevant to the research questions.

(5) Defining and naming themes: defining and naming the themes occurred as part of the previous and next stage.

6. Writing up: analytic narratives of the themes were written. The use of full poems to illustrate themes is valued in art-based research as a way to empower and holistically represent participants (e.g., Amponsem et al., 2022; Furman et al., 2007). However, this is not always possible due to constraints on word count in academic writing. To address this, the aforementioned anthology of submitted poems can be accessed by readers as a way of centring participant experiences.

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.

Findings

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.

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 gives voice to experiences of hope	The capacity of people living with dementia to have hope	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
Peers uphold hope and cast away the darkness		Creating hope together

Themes

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 an ear that’s failing, and a brain that’s decidedly wonkyThe ear can be fixed The brain can’t

Poem Eight

Not knowing how much longer I have to cherish them; to live and love themThey are my memories; they are my thoughts and my every action is for them Until there is nothing more to forget, nothing more to give, nothing more…

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

Perhaps I’ll die suddenly before I’m stuck staring out front Perhaps I’ll manage to end it myself…but when? and how? Perhaps I’ll end up in a really nice care home… Coin toss chance?

Poem Twenty-Six

Now the "old age" is here…Sadly, our little world is falling apart... Because of one single word: Dementia!

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 is what I cling to Hope is an umbrella shielding me from the rain…Hope feels like never losing sight of possibilities

Poem Four

Hoping against the odds that all will be well Believing life is worth livingGetting up each day with enthusiasm

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

Poem eighteen

Hope gives me strength, gives me a strong vision To continue with life, I’m now on a mission

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

Whatever it is, we hold on to hope Not to fall down, the slippery slope…

Where would I be without this word Hope Living my life without much scope

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

Yet knowing that, sometimes, I

find my 'me' undone and left

behind.

Lost in thoughtless, meaningless

Visions

Then best retreat. Stand back! Review!

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

Are you in my heartMy memory, my brain?

Where do you go to Will you come back again?

…Or will you disappear again?

I hope you stay

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

Hope tastes of chocolate

Hope smells of Mustique

Hope is in talking and conversations

Hope is Fresh air

Hope is sunshine

Hope is Strawberries….And cream

Poem Twenty-Three

Hope sounds like singing in the chapel

Hope smells like a field of blooming flowers

Hope looks like the brightest summer day

Hope tastes like the sweetest fruit

Poem Twelve

Hope is a good night’s sleep

Sounds like peace and quiet Smells like bacon sandwiches

Looks like sunshine

Tastes like a good glass of wine

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

Day by day I look for the things I can achieve

Achieve them and notch them up as a success

Poem Six

So I hope for friendship

I hope to paint and write and laugh

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

I hope for a cure of course, everyone does But it’s probably not coming

So I hope… To live a good life… I hope for the disease to be slow To treat me kindly

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

HOPE makes me feel like the world is my forever! HOPE gives me hope that 1 day, our world will be as one! I hope xx

Poem Twenty

Will you give me hope For peace in Ukraine

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

Do we have a goal? Or we have a wish. Do we have a dream? Or we have a faith. No, we have dementia!

End of story here! Yes?

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

I want to scream, I’m still me

Me, it’s me inside, it’s just words

Words come out differently and not as they should Should I stay at home and shy away

Away! Hell no, I’m still for living, still for giving

Giving what I still have left, helping when I can

Can I go on living a life worthwhile, you bet I WILL!

Will I be quiet about my dementia and feel ashamed

Ashamed NO! Not even sad, for I am still ME!

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)

One word we don’t hear at diagnosis, one word we so desperately need, sinking into a depth of despair simply because that one word is missing, one word for the life still to be lived, one word offering encouragement, one word that could help us see light, amidst this dark black tunnel, One word that smiles, that brings about relief, one simple word to help us cope, what is that word? It’s HOPE.

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

I find Hope in having a community of people just like myself, Regardless of culture or country; race or religion, who love me as I am – me! What I bring to the table: poems, articles or just a reassuring word We research our common thread and try to understand – Dementia I find happiness in their happiness; courage in their courage I find purpose in this community of people, just like me, just as I am

Poem nineteen

Peers uphold our hope and cast the darkness away

Poem Twenty-Three

Hope is the love of my family

Hope is the support of my friends

Discussion

Using poetry as data, the current study explored the meanings and experiences people with dementia attributed to hope. Hope was defined as a personal resource that plays a vital role in managing well-being after a diagnosis of dementia. It did so by orientating people to their personal capabilities and current possibilities in the context of dementia while acting as an energising force that facilitated engagement with pleasant activities. Without hope, life was seen as being full of fear and despair. Participants also highlighted several facilitators and barriers to hope. Facilitators included positive social interactions while barriers included hopeless discourses held by others.

The representation of hope in the current study as a personal resource that supports people with dementia to identify and engage in meaningful activities differs from Snyder’s Hope Theory, a dominant conceptualisation of hope. Snyder’s Hope Theory depicts hope as a cognitive process that requires future goal setting, pathways thinking and a sense of agency (Snyder et al., 1991). When models of hope that are preoccupied with the future and cognitive ability are imposed on a population living with progressive and terminal illnesses, it is argued that this only leaves room for hopeless discourses about people’s capacity to have hope. Participants reported blockages to goal setting, such as the limited outlook of the future as imposed by others, to their pathways thinking, such as cognitive difficulties, and their successful agency, such as functional impairments. However, the current study suggests that by expanding conceptualisations of hope to include a process of adapting to challenges and prioritising what is currently important, discourses of hope become inclusive of people with terminal illnesses whose future is filled with uncertainties, such as people with dementia.

The current study also demonstrates that people with dementia have the capacity for hope and that having hope is important to live well with dementia. A review of 27 studies found that through enjoyment, hope, love, support, facing dementia, growth and transcendence, people with dementia can ascertain positive experiences (Wolverson et al., 2016). The current study demonstrates that hope is not unitary nor separate from the other avenues for positive experiences identified in Wolverson et al. (2016), and is, instead, a multidimensional augmentation of all these. This expansion in previous findings emphasises the need to foster hope for people with dementia, as hope permeates through a large proportion of people’s lives, positively influencing internal processes such as the acceptance of dementia diagnosis, motivation to seek present enjoyment and ability to adapt to the challenges of dementia.

The current study provides some avenues for hope fostering interventions in dementia care. Participants experienced hope by immersing themselves in pleasant activities in the here and now, suggesting that interventions that orient people’s attention to the present can be used to develop and maintain hope. Indeed, there is further evidence for the positive influence that being present-focused has on well-being. Mindfulness interventions, which aim to foster increased awareness of the present moment, have been growing in healthcare (Baer, 2003; Creswell, 2017). Used with people with dementia, mindfulness interventions have been found to improve well-being (Leader et al., 2013), mood (Leader et al., 2013, Kemp et al., 2016) and quality of life (Leader et al., 2013, Churcher Clarke et al., 2017). Churcher Clarke et al. (2017) only found statistically significant improvements in quality of life, and not in anxiety and depression measures post-intervention. However, the reliability of these findings was likely affected by the fact that it was an inadequately powered pilot study. Russell-Williams et al., (2018) provide further evidence for the value of mindfulness interventions, demonstrating that people with dementia, mild cognitive impairment and subjective cognitive decline report improved cognitive functioning, perceived stress, and quality of life after mindfulness-based interventions. The participant base of this study was broader and affects the transferability of these findings to people with dementia. However, overall findings for mindfulness intervention studies support the current study and indicate that engaging people with dementia in mindfulness activities has value, as it has the potential to improve the wellbeing and maintain the hope of people with dementia.

The current study highlights the significant role that others have in maintaining the hope of people with dementia. It demonstrates an ongoing need to challenge stigmatising discourses of dementia, as these act as barriers to hope. Post-diagnostic support would benefit from going beyond a preoccupation with reducing symptoms (Spector, 2004) to include interpersonal hope fostering interventions. Health care professionals can do this by highlighting retained strengths during and post-diagnosis to highlight what people are still capable of in the context of dementia. It would also be beneficial to support carers and family members of people with dementia to maintain their hope, as hope was depicted as a reciprocal experience where others’ hope helped to maintain the hope of people with dementia. Findings from previous research align with these avenues for facilitating hope. For example, positive social interactions were also identified by Wolverson et al. (2010) as being vital for hope. While the findings of Wolverson et al. (2010) were limited to the importance of maintaining personal relationships, this study highlighted that health professionals and society at large also had a role in fostering the hope of people living with dementia.

Poetry was found to be a useful gateway through which people could clearly demonstrate their capacity for hope. As such, poetry can be used to facilitate hope fostering discourses, challenging the hopeless and stigmatising narratives of dementia. This would be particularly useful to implement in healthcare settings as hopelessness in healthcare staff affects the quality of care and clinical outcomes in dementia (Kontos et al., 2020; Spector & Orrell, 2006). There is evidence to suggest that poetry interventions can be used to maintain the personhood of people with dementia in the eyes of those who care for them (Gregory, 2011). In a study evaluating a poetry-writing intervention, poetry was found to improve communication between people with dementia and their professional carers (Gregory, 2011). In addition, Garrie et al. (2016) found that medical students’ attitudes toward people living with dementia significantly improved when they engaged in a poetry writing workshop with people living with dementia. Thus, poetry interventions can be used to improve the quality of care for people with dementia by supporting health professionals to develop balanced narratives of dementia. This would facilitate the challenging of stigmatising and hopeless narratives and influence the provision of hope fostering care practices.

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.

Conclusions

The current study took a unique approach to exploring the lived experience of people with dementia, highlighting the value of using poetry to explore complex experiences such as hope. This study demonstrates that people with dementia are capable of hope, and highlights that hope supports people to live well with dementia. Given the protective and adaptive function of hope in the lives of people with dementia, hope fostering interventions are needed to support the development and maintenance of hope in clinical practice. A key finding here is the role that others play in maintaining the hope of people living with dementia. Hope can be supported through valuing the personhood of people with dementia and providing opportunities for engaging in pleasant experiences in the here and now, with specific avenues for support being mindfulness-based and poetry interventions. It would be beneficial for future research to explore how mindfulness-based and poetry interventions affect hope and the overall well-being of people with dementia.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Ethical approval

Ethical approval was granted by the Faculty of Health Sciences Ethics Committee at the University of Hull (REF FHS340).

ORCID iDs

Sheriffa Amponsem

Emma Wolverson

Sheriffa Amponsem (BSc. Hons; D Clin. Psy) is a clinical psychologist at Leads Teaching NHS Hospitals Trust. She underwent her clinical training with Humber Teaching NHS Foundation Trust. Sheriffa has a research interest in challenging unhelpful narratives about the lives of stigmatised groups, such as people living with dementia. She has an interest in the use of creative research methods.

Emma Wolverson (BSc. Hons; D Clin. Psy) is a clinical psychologist at Humber Teaching NHS Foundation Trust and a Senior Lecturer in Ageing and Dementia at the University of Hull. Emma's research aims to support people with dementia to live well by promoting wellbeing, reducing stigma and improving care.

Chris Clarke (BSc. Hons; D Clin. Psy) is a Clinical Researcher and Consultant Clinical Psychologist with Tees, Esk & Wear Valleys NHS Trust, UK. He is also a visiting lecturer/researcher at the Universities of Hull and Bradford. His research activities and interests focus on the application of positive psychology to living with dementia, theory of change development and also outcome measurement in relation to psych-social interventions in dementia. He is the co-author of Positive Psychology Approaches to Dementia (Jessica Kingsley Publishers, 2016).

References

Amponsem

Wolverson

Clarke

(2022). Exploring the Use of poetic Inquiry in health research: A metamethods systematic literature review . University of Hull. [Unpublished doctorate thesis].

Aquilina

Hughes

J. C.

(2006). The return of the living dead: Agency lost and found. Dementia: Mind, Meaning, and the Person, 143–161.

Baer

R. A.

(2003). Mindfulness training as a clinical intervention: A conceptual and empirical review. Clinical Psychology: Science and Practice, 10(2), 125.

Behuniak

S. M.

(2011). The living dead? The construction of people with Alzheimer’s disease as zombies. Ageing & Society, 31(1), 70–92.

Bergin

Walsh

(2005). The role of hope in psychotherapy with older adults. Aging & Mental Health, 9(1), 7–15.

Berk

Warmenhoven

Van Os

Van Boxtel

(2018). Mindfulness training for people with dementia and their caregivers: Rationale, current research, and future directions. Frontiers in Psychology, 9(982).

Berwald

Roche

Adelman

Mukadam

Livingston

(2016). Black African and Caribbean British communities’ perceptions of memory problems: “We don’t do dementia. PloS One, 11(4), e0151878.

Bishop

Willis

(2014). Hope is that fiery feeling": Using poetry as data to explore the meanings of hope for Young people. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 15(1).

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology , 3(2), 77–101.

10.

Braun

Clarke

(2013). Successful qualitative research: A practical guide for beginners. Sage.

11.

Braun

Clarke

(2021). In Thematic analysis: A practical guide. Sage.

12.

Cahill

Begley

Topo

Saarikalle

Macijauskiene

Budraitiene

Hagen

Holthe

Jones

(2004). ‘I know where this is going and I know it won’t go back’ hearing the individual’s voice in dementia quality of life Assessments. Dementia, 3(3), 313–330.

13.

Campo

(2003). The healing art: A doctor's black bag of poetry. WW Norton & Company.

14.

Castro

Clark-McGhee

(2014). Poetry written from the words of people given a diagnosis of dementia: A narrative analysis. In Narratives of continuity and change (pp. 144–158). Routledge.

15.

Churcher Clarke

Chan

J. M. Y.

Stott

Royan

Spector

(2017). An adapted mindfulness intervention for people with dementia in care homes: Feasibility pilot study. International Journal of Geriatric Psychiatry, 32(12), 123–131.

16.

Cohen

(1991). The subjective experience of Alzheimer's disease: The anatomy of an illness as perceived by patients and families. American Journal of Alzheimer's Care and Related Disorders & Research, 6(3), 6–11.

17.

Cotter

V. T.

(2009). Hope in early-stage dementia: A concept analysis. Alzheimer's Care Today, 10(4), 232–237.

18.

Cotter

V. T.

Gonzalez

E. W.

Fisher

Richards

K. C.

(2018). Influence of hope, social support, and self-esteem in early-stage dementia. Dementia, 17(2), 214–224.

19.

Creswell

J. D.

(2017). Mindfulness interventions. Annual Review of Psychology, 68(1), 491–516.

20.

Cutcliffe

J. R.

Grant

(2001). What are the principles and processes of inspiring hope in cognitively impaired older adults within a continuing care environment? Journal of Psychiatric and Mental Health Nursing, 8(5), 427–436.

21.

Dalby

Sperlinger

D. J.

Boddington

(2012). The lived experience of spirituality and dementia in older people living with mild to moderate dementia. Dementia, 11(1), 75–94.

22.

Daneault

Lussier

Mongeau

Yelle

Côté

Sicotte

Paillé

Dion

Coulombe

(2016). Ultimate journey of the terminally ill: Ways and pathways of hope. Canadian Family Physician, 62(8), 648–656.

23.

DuFault

Martocchio

B. C.

(1985). Symposium on compassionate care and the dying experience. Hope: Its spheres and dimensions. The Nursing Clinics of North America , 20(2), 379–391.

24.

Duggleby

Lee

Nekolaichuk

Fitzpatrick‐Lewis

(2021). Systematic review of factors associated with hope in family carers of persons living with chronic illness. Journal of Advanced Nursing, 77(8), 3343–3360.

25.

Erickson

(1977). Childhood and society. Paladine.

26.

Feldman

D. B.

Snyder

C. R.

(2005). Hope and the meaningful life: Theoretical and empirical associations between goal–directed thinking and life meaning. Journal of Social and clinical Psychology, 24(3), 401–421.

27.

Ferri

Prince

Brayne

Brodaty

Fratiglioni

Ganguli

, et al. (2005). Global prevalence of dementia: A delphi consensus study. The Lancet, 366(9503), 2112–2117.

28.

Furman

Langer

C. L.

Davis

C. S.

Gallardo

H. P.

Kulkarni

(2007). Expressive, research and reflective poetry as qualitative inquiry: A study of adolescent identity. Qualitative Research, 7(3), 301–315.

29.

Garand

Lingler

J. H.

Conner

K. O.

Dew

M. A.

(2009). Diagnostic labels, stigma, and participation in research related to dementia and mild cognitive impairment. Research in Gerontological Nursing, 2(2), 112–121.

30.

Garrie

A. J.

Goel

Forsberg

M. M.

(2016). Medical students’ perceptions of dementia after participation in poetry workshop with people with dementia. International Journal of Alzheimer’s Disease.

31.

Gregory

(2011). Using poetry to improve the quality of life and care for people with dementia: A qualitative analysis of the try to remember programme (3, pp. 160–172). Arts & Health.

32.

Hakola

(2019). Zombies, vampires and frankenstein’s monster–embodied experiences of illness in living dead films. Thanatos, 8(1), 91–119.

33.

Herth

(1993). Hope in older adults in community and institutional settings. Issues in Mental Health Nursing, 14(2), 139–156.

34.

Hickman

Clarke

Wolverson

(2018) A qualitative study of the shared experience of humour between people living with dementia and their partners Dementia.

35.

Johnson

(2007). Hope in terminal illness: An evolutionary concept analysis. International Journal of Palliative Nursing, 13(9), 451–459.

36.

Katsuno

(2005). Dementia from the inside: How people with early-stage dementia evaluate their quality of life. Ageing and Society, 25, 197.

37.

Kemp

Wilkinson

Cambray

Johnsson

(2016). Case report: Accepting what is present: Could learning mindfulness together be a useful intervention for a couple living with dementia? FPOP Bulletin, 134, 20–24.

38.

Killick

(1999). What are we like here?' eliciting experiences of people with dementias. Generations: Journal of the American Society on Aging, 23(3), 46–49.

39.

Killick

(2007). Dementia and “me-ness” the poetry of ian McQueen. Alzheimer's Care Today, 8(1), 8–11.

40.

Killick

(Ed.), (2009). The elephant in the room: Poems by people with memory loss in cambridgeshire. Cambridgeshire County Council.

41.

Kontos

Grigorovich

Dupuis

Jonas-Simpson

Mitchell

Gray

(2020). Raising the curtain on stigma associated with dementia: Fostering a new cultural imaginary for a more inclusive society. Critical Public Health, 30(1), 91–102.

42.

Lapierre

Bouffard

Bastin

(1997). Personal goals and subjective well-being in later life. The International Journal of Aging and Human Development, 45(4), 287–303.

43.

Linley

P. A.

Joseph

(2004). Positive change following trauma and adversity: A review. Journal of traumatic Stress: Official Publication of the International Society for Traumatic Stress Studies, 17(1), 11–21.

44.

MacRae

(2010). Managing identity while living with Alzheimer’s disease. Qualitative Health Research, 20(3), 293–305.

45.

Magaletta

P. R.

Oliver

J. M.

(1999). The hope construct, will, and ways: Their relations with self‐efficacy, optimism, and general well‐being. Journal of Clinical Psychology, 55(5), 539–551.

46.

Mitchell

G. J.

Dupuis

S. L.

Kontos

(2013). Dementia discourse: From imposed suffering to knowing other-wise. Journal of Applied Hermeneutics, 5, 1–19.

47.

Moniz-Cook

Manthorpe

Carr

Gibson

Vernooij-Dassen

(2006). Facing the future: A qualitative study of older people referred to a memory clinic prior to assessment and diagnosis. Dementia, 5(3), 375–395.

48.

Naue

Kroll

(2009). The demented other’: Identity and difference in dementia. Nursing Philosophy, 10(1), 26–33.

49.

O’Malley

M. P.

Shortt

Carroll

(2022). Representations of the experiences of people with dementia in Irish newspapersDementia, 21(4), 1343–1362.

50.

Pardo-Moreno

González-Acedo

Rivas-Domínguez

García-Morales

García- Cozar

F. J.

Ramos-Rodríguez

J. J.

Melguizo-Rodríguez

(2022). Therapeutic approach to Alzheimer’s disease: Current treatments and new perspectives. Pharmaceutics, 14(6), 1117.

51.

Patterson

K. M.

Clarke

Wolverson

E. L.

Moniz-Cook

E. D.

(2018). Through the eyes of others–the social experiences of people with dementia: A systematic literature review and synthesis. International Psychogeriatrics, 30(6), 791–805.

52.

Pearson

Clarke

Wolverson

(2022). In The meaning and experience of gratitude for people living with dementia. Dementia (21, pp. 335–352).

53.

Peterson

Seligman

M. E.

(2004). In Character strengths and virtues: A handbook and classification (1). Oxford University Press.

54.

Pharris

A. B.

Munoz

R. T.

Hellman

C. M.

(2022). Hope and resilience as protective factors linked to lower burnout among child welfare workers. Children and Youth Services Review , 136, 106424.

55.

Prince

Bryce

Albanese

Wimo

Ribeiro

Ferri

(2013). The global prevalence of dementia: A systematic review and metaanalysis. Alzheimer's & dementia, 9(1), 63-75.

56.

Radbourne

Clarke

Moniz-Cook

E. D.

(2008). Remaining hopeful in early dementia. Paper presented at the Alzheimer’s europe annual conference (may).

57.

Rapkin

B. D.

Fischer

(1992). Framing the construct of life satisfaction in terms of older adults' personal goals. Psychology and Ageing, 7(1), 138.

58.

Roche

Higgs

Aworinde

Cooper

(2021). A review of qualitative research of perception and experiences of dementia among adults from Black, African, and Caribbean background: What and whom are we researching? The Gerontologist, 61(5), e195–e208.

59.

Russell-Williams

Jaroudi

Perich

Hoscheidt

El Haj

Moustafa

A. A.

(2018). Mindfulness and meditation: Treating cognitive impairment and reducing stress in dementia. Reviews in the Neurosciences, 29(7), 791–804.

60.

Scholl

Sabat

(2008). Stereotypes, stereotype threat and ageing: Implications for the understanding and treatment of people with Alzheimer's disease. Ageing And Society, 28(1), 103–130.

61.

Schrank

Stanghellini

Slade

(2008). Hope in psychiatry: A review of the literature. Acta Psychiatrica Scandinavica, 118(6), 421–433.

62.

Seligman

Csikszentmihalyi

(2000). Positive psychology: An introduction. American Psychologist, 55(1), 5–14.

63.

Seligman

M. E.

(2002). Authentic happiness: Using the new positive psychology to realize your potential for lasting fulfilment . Simon and Schuster.

64.

Shapiro

(2004). Can poetry Be data? Potential relationships between poetry and research. Families, Systems, and Health, 22(2), 171–177.

65.

Snyder

C. R.

Irving

L. M.

Anderson

J. R.

(1991). Hope and health. Handbook of social and clinical psychology: The Health Perspective , 162, 285–305.

66.

Soundy

Stubbs

Freeman

Coffee

Roskell

(2014). Factors influencing patients' hope in stroke and spinal cord injury: A narrative review. International Journal of Therapy and Rehabilitation , 21(5), 210–218.

67.

Spector

(2004). Quality of life in dementia: A comparison of the perceptions of people with dementia and care staff in residential homes . University of London, University.

68.

Spector

Orrell

(2006). Quality of life (QoL) in dementia: A comparison of the perceptions of people with dementia and care staff in residential homes. Alzheimer Disease & Associated Disorders , 20(3), 160–165.

69.

Spector

Thorgrimsen

Woods

R. T.

Orrell

(2006). Making a difference: an evidence-based group programme to offer Cognitive Stimulation therapy (CST) to people with dementia. Hawker Publications.

70.

Swaffer

(2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13(6), 709–716.

71.

Sweeting

Gilhooly

(1997). Dementia and the phenomenon of social death. Sociology of Health & Illness, 19(1), 93–117.

72.

Swinnen

A. M.

(2016). Healing words: A study of poetry interventions in dementia care. Dementia, 15(6), 1377–1404.

73.

Van Gorp

Vercruysse

(2012). Frames and counter-frames giving meaning to dementia: A framing analysis of media content. Social Science & Medicine, 74(8), 1274–1281.

74.

Wolverson

E. L.

Clarke

Moniz-Cook

(2010). Remaining hopeful in early-stage dementia: A qualitative study. Aging & Mental Health, 14(4), 450–460.

75.

Wolverson

E. L.

Clarke

Moniz-Cook

E. D.

(2016). Living positively with dementia: A systematic review and synthesis of the qualitative literature. Aging & Mental Health , 20(7), 676–699.

76.

Yiannopoulou

K. G.

Papageorgiou

S. G.

(2020). Current and future treatments in Alzheimer disease: An update. Journal of Central Nervous System Disease, 12, 1179573520907397.