Healthcare | Free Full-Text | ‘Misdiagnosed and Misunderstood’: Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry
[ad_1]
3.1. The Poems
Facilitating poets received words (source material) from 71 stakeholders and co-constructed 27 poems. Results are organised by prompts and themes together with three representative poems below (representative poems were chosen to convey different forms of rarer dementias across the three prompting questions). Table 3 contains a list of prompts, themes and titles of all 27 poems. Table 4 contains themes, sub-themes and illustrative quotes organised by prompt. The entire collection of poems, accompanied by the facilitating poets’ explanations for each poem, are in Supplemental Figure S2.
3.1.1. Prompt 1 (for Poems 1–9, Supplemental Figure S2): What Is Your Experience of Having (Type of Dementia) or Being a Family Member Caring for Someone with This Type of Dementia?
Out Here in the Rain
“We are not the walking dead”
I’m stuck here with a rare disea … eeeze
devastating
terrifying
heart breaking
frustrating
The physicians don’t have a clue, who?
very maddening
very stressful
very sad
I’d be stuck in last century
sitting here clueless
fear
stigma
You blessed me with a nursing degree
opportunity
education
support
understanding
Becoming and blossoming into something different
yet beautiful
Finding a deep sense of self
freeing
comical
Hours fly by like minutes
faces I ought to remember
no longer provide me names
I read and read about how to ease the pain
but none of the doctors can agree … ee
leaving me out here in the rain
with all the pain
The overarching theme, Temporality Disrupted (Table 4), captures the constant challenges of day-to-day life and also casts ahead at a disrupted future. Three sub-themes, Uncharted Territory, Being in the Moment, and Re-discovering Identities and Relationships highlight some of the enormous challenges of Temporality Disrupted, but also provide glimpses of the importance of focusing on positive moments in the present as a backdrop to an unknown, terrifying future. Temporality as a psychosocial construct has its modern roots in psychoanalytic and phenomenological theories and focuses “on subjectivity and its capacity for a temporization of events can shed light on the temporal constitution of experience, especially when this involves traumatic phenomena” [45] (p. 37). Stakeholders’ poetic contributions illuminated often hidden and private traumas that generated disruptions in identity and in family, social and professional relationships, accompanied by a loss of dignity [46]. Over time, trauma is intensified by the lack of support in their social environment of family and friends. The unfamiliarity and unexpectedness of the diagnosis was reflected in the poems, and generally associated with intense emotions, reflecting deep losses. The sub-theme Uncharted Territory, like much of the analysis, reflects a shared narrative of both PLwRD and care-partners’ experiences as unfamiliar and unexpected, owing to the atypical symptoms and age of onset (e.g., “letter, number and word finding difficulty” (11.12.FTD.PLwRD-1); “hallucinations” (6.1.PCA.PLwRD-1)) that were not well understood, even by health providers (e.g., “the physicians don’t have a clue” (12.5.LBD.C-1). Subjective appraisals of emotions as seen in Table 4 are not unfamiliar in the broader dementia literature [47], but take on new developmental perspectives with a different sense of temporality, in younger-onset and less well-known dementia. Being in the Moment was seen as a process of adapting to and accepting a new reality, rather than a one-time experience. Furthermore, it was sometimes associated with finding the lighter side of the journey. Despite many changes, people living with dementia and their care-partners also described their efforts at Re-discovering Identities and Relationships, which involved reflecting on where they now were in the world and reaffirming the importance of their connections with others.
3.1.2. Prompt 2 (for Poems 10–18, Supplemental Figure S2): How Would You Describe (Type of Dementia) to a Friend or Family Member?
Where to begin?
Where to begin?
Brain blindness
Vision is darker. That’s not a rubber mat?
I can see it, but at the same time I can’t see it.
Confusing, disorientating.
Good days and foggy days
Frightening
Where to begin?
Which way round does this go?
Things aren’t where they appear to be
I wish you could see through my eyes
Invisible dementia
Misdiagnosed and misunderstood
Getting confused more often
How to describe something
No more words
Which way round does this go?
Why can’t I find things?
I wish you could see what I see
It’s a black hole
I can’t do anything I used to be able to do
Eyes are okay in themselves
No more driving
Staying positive as possible
How to begin?
Why can’t I find things?
Where is the top or the bottom?
When I struggle to understand
Word searching
Things aren’t where they appear to be
The brain effects the eyes
Embuggerance
No more words
Misunderstood
Where is the top or the bottom?
Where is the top or the bottom?
Why can’t I find things?
Which way round does this go?
Where to begin?
A Rollercoaster seems to sum up the primary theme, scaffolded by the nuances found in sub-themes, Heartbreaking Losses, Shifting Selves and Changing Worlds, Misdiagnosed and Misunderstood and I Can. Describing their specific type of dementia to friends and family conveyed vivid but complex social and psychological disruptions to their lives filled with penetrating feelings of devastation and fear. PLwRD and care-partners both described changes in independence, abilities and symptoms as part of being on a Rollercoaster. Most conspicuously described were the intensely painful Heartbreaking Losses of physical and mental functions, relational interactions along with a sense of “being invisible”. Shifting Selves encompasses changes to their personhood [48] and relationships [46], which were also portrayed as in flux and now lacking familiar consistency. Reflected in the anger and anguish of being Misdiagnosed and Misunderstood included initial experiences seeking to find out what was wrong. Being of a younger age and having atypical symptoms often initially led to an inaccurate or no diagnosis, whilst also being referred multiple times to different specialties. Trying to inform sceptical family and friends who questioned and doubted whether the person actually had dementia (e.g., because they were “too young”, “their memory is fine”, and “It’s a mental health thing”) further exasperated feeling misunderstood and underlined the sense of going it alone. Yet, despite the emotional devastation accounted for in the poems, there were moments of relief and positivity. A sense of I Can was attained by reflecting on life prior to the diagnosis and cultivating feelings of gratitude. For others this came from living in the moment and having a sense of agency. For some, positivity was about retained abilities and qualities.
3.1.3. Prompt 3 (for Poems 19–27, Supplemental Figure S2): What Does Support Mean to You?
Help Me
It’s a range of things —
compassion, understanding, love —
someone who listens … and believes me
someone who helps when I’m down and out
someone who reaches out
and gives me another path or crutch (an option)
someone to hug me and tell me it’s ok
someone who can take over when it’s too much
In between
there is support that helps me see things differently
and support that just takes time
to listen and see things the way I do,
not judged by expression of my thoughts or feelings
Never tell me I’m not doing enough for my husband —
just step in to help me!
Help me, so I can help him.
Honour his wishes.
Help is a range of things.
(an option: leave cookies on our porch!)
The overarching theme from this set of poems is Multidimensional Support, a complex interaction of temporal, emotional, and interpersonal components identified by sub-themes, Not in This Alone, Compassion and Understanding, and Support as an Action. As noted previously by stakeholders, obtaining care and support for rarer forms of dementia was often extremely challenging and time consuming. Not In This Alone was one of the primary consequences of support that actively countered the sense of isolation. Meeting peers who are experiencing similar life events to discuss, learn from—and also offer help to—was a cornerstone for carers. For those living with dementia, this theme encapsulated support as helping to balance out the vicissitudes of daily struggles. Not having symptoms and age of onset typically synonymous with more prevalent types of dementia, nor well understood by healthcare professionals, contributes to a sense of being alone, yet when symptoms and concerns are not dismissed, support is felt. In situations when PLwRD are able to access knowledgeable healthcare professionals and specialist charities offering diagnosis-specific peer support there is a marked sense of being less alone. Strongly echoed by many, feeling less isolated could be achieved if more healthcare professionals become knowledgeable about rarer types of dementia.
The meaning of support, regardless of dementia diagnosis, is likely to be grounded in experiencing compassion from others [49]: a “sympathetic consciousness of others’ distress with a desire to alleviate it” [50] (p. 169). This was also reflected from stakeholders in the present study. Compassion and Understanding involved familiarity, dependability, and strength. Being believed was an important component of this theme for both PLwRD and care-partners given that these conditions manifest in such atypical ways, contrary to common assumptions, and in contrast to more typical memory-led dementia. Linked to Compassion and Understanding, Support as an Action for PLwRD can mean a duality of action and social activity that helps to enable, increase confidence and provide structure. The poems conveyed, from care-partners and PLwRD, that support was bi-directional, encompassing being helped but also helping others. As described by Keyes et al. [51], helping others is part of the mechanism of providing peer support for this population, which “shifts the focus away from people with dementia as passive recipients” (p. 572) of support to active deliverers.
3.1.4. Poems: Narrative Synthesis
Traumatic experiences can “generate a disruption in the person’s identity and sense of reality, which deeply involve the dimension of time” [45] (p. 37). As these poems suggest, the temporisation of experience is a shared narrative felt by both care-partners and those living with rarer forms of dementia. The poems resonate with the growing literature on young onset and rarer forms of dementia that highlight the challenges in obtaining a diagnosis and receiving appropriate care across the caregiving trajectory, the absence of awareness of atypical conditions by healthcare providers, and a dementia care system that focuses on those over age 65 [2,4]. The poems provide a range of insight into the varied experiences of both PLwRD and care-partners. This “unfolding group narrative is made up of multiple voices each shaped in relation to each other” [52] (p. 2), described by Bakhtin [53] as “A plurality of independent and unmerged voices and consciousnesses, a genuine polyphony of fully valid voices” (p. 6). Further understanding of ‘in the moment’ temporality, and what occurs before and after each moment [54], through targeted poetry prompts and discussion of completed poems, could help promote the development of better support practices co-developed with this population.
3.4. Stakeholder Group Interviews
The findings from the thematic analysis of the group interviews were organised into four main themes: Lived Experience and Reflection, Curiosity and Exploration, Barriers and Inclusivity and Sharing the Poems. These themes and their sub-themes (Table 7) are described below and supported with illustrative data excerpts.
3.4.1. Lived Experience and Reflection
This theme captured moments from the group interviews wherein participants noted ways in which the poems helped them reflect on their own experiences.
Hearing own experience in a different way and Poetry conveys emotion and meaning
A number of participants, in describing this phenomenon, mentioned the uniquely powerful experience of hearing their own experiences reported back to them in a different way:
“Hearing these words spoken because just inside one’s head is almost not enough […] It just expands the experience if you hear it. And if you hear it in someone else’s voice […] because of his inflexions on certain things, and his understanding, and appreciation of those words, it just opened up another voice for me, and I found that—I’m getting goosebumps actually just thinking how that was revelatory to me.”
(bvFTD.C-England).
Validating invisible distress
Another sub-theme appearing frequently during these conversations was the fact that participants felt, up until this point, that certain elements of their own distress were invisible, and that they were alone with certain experiences. From the conversations it seemed that, in many cases, hearing these experiences reflected back to them in the poems helped them feel validated.
“There was nobody that I could connect with there […] there was no local doctor, even our local Alzheimer’s group, there was no one at all that was even closely in my situation. And when I thought about the idea that other people were pondering this same question at the same time […] I thought, well, I’m not alone. I’m still in a little vacuum. I’m still in my little corner of the world, but somebody else is thinking the same painful thought or […] pondering the same issue that I’m pondering and so I think that was very important for me.”
(YOAD. C-Canada).
Multi-voiced or group lived experience
Michelle’s account (above) also hints at another theme emerging regularly when participants discussed the relationship between the poems, reflection and lived experience, the fact that the poems, due to the methodology, contained multiple voices, and similar experiences, layered on top of each other.
“I think it’s fun. I think it’s amusing. It is a lot of fun for me to see how the words were put together. My thoughts and other people’s thoughts. And I see a lot of similarity of course of emotions, flowing throughout the poems.”
(PPA.PLwRD-Singapore)
Poetry conveys emotion and meaning
Georgia’s account (above), in turn, also demonstrates another theme that emerged frequently when participants discussed the poems in relation to Reflection and Lived Experience. This was poetry’s unique capacity to convey emotion and meaning. The words “emotion”, “feeling” and “meaning” came up extremely frequently during the groups, and were frequently, in being brought up, linked together.
“And somehow, the rest of the words put meaning to what you said. […] It expresses my feelings for me, if you like. I probably couldn’t put it into words. I mean, I can express lots of feelings, but those particular feelings, I couldn’t put- I don’t think, I don’t try, I haven’t tried.”
(PCA.C-England)
3.4.2. Curiosity and Exploration
This theme captures responses which foregrounded the idea that research poetry differed from other research activities in promoting a sense of both curiosity and free exploration.
Creative aspect piquing interest
Several responses made reference to the creative nature of the activity, going as far as to suggest this was their main reason for having gotten involved. A care-partner answered a prompt about their reasons for participating: “Just that it was a creative process. I mean, I just love the idea that I could be involved in something. Where I’ve always felt […] huge support from [blinded], but to actually be able to appreciate something in a creative way was wonderful for me.” (bvFTD.C-England).
Novel methodology and experience
There were also a number of similar responses noting a participant’s excitement either at the novelty of the method or the fact that participating represented an opportunity to engage in a new experience:
“Yes, I thought this was a really unusual opportunity and it was really refreshing […] I thought poetry was a surprising choice […] it’s the first time I’d been asked to do anything like this and I thought it’s innovative really, and unusual, so I was curious as well.”
(PCA.C-England)
No wrong answers (gut response)
The final sub-theme of Curiosity and Exploration captured contributions which highlighted the ways the poetic form, and its emphasis on there being no wrong answers, allowed individuals to engage their curiosity and explore their “gut responses” in a way other research activities might not have:
“It actually felt good to have participated in something and the process of doing it […] for me was […] very creative because it called on emotion, not on cognitive processing and I spend my life in a in different world, and so it was really a stretch to just respond from emotion.”
(FTD.C-Canada)
It is worth noting that the above quote, like many of the contributions comprising this sub-theme, illustrated the ways in which the method of narrating experiences without thinking about them too much allowed participants to explore their own emotional life. This theme is therefore heavily connected to the above sub-theme, Poetry conveys emotion and meaning.
3.4.3. Barriers and Inclusivity
This theme captured contributions which dealt with research poetry’s unique challenges with regard to engagement. These conversations centred on barriers to engaging with the poems as outputs, but also as a research activity in the first place.
Am I a poetry person?
These contributions tended to put forward the idea that enjoying or creating poetry is an identity trait, with some members of the focus group self-identifying as people who find poetry inherently difficult:
“Just having the opportunity […] to reflect on how you’re feeling because, my husband and I are both lawyers and we’re very analytical, and so feelings […] for us or that’s not something that […] we’re allowed.”
(FTD.C-Canada)
Within this contribution, Annie notes the challenge stemming from her and her husband’s analytical predisposition but doesn’t describe it as an insurmountable one. There were also several members, notably, who did self-identify as “poetry people” and for these participants, the poetic aspect made the task easier to engage with than a more scientific research activity.
Poetry as scary
Another sub-theme, interconnected with the above one, was centred on the fact that poetry could be inherently scary. This brought together contributions which displayed an awareness, on the part of participants, that poetry has a reputation for being daunting or difficult to understand:
“We have, generally, certainly, in this country, we have a really poor experience of poetry. Perhaps it’s not taught properly at school […] I don’t know how it materialises, but people run away from it and miss, in my opinion, so much beauty.”
(bvFTD.C-England).
Reading the all the poems was overwhelming
The final sub-theme within the Barriers and Inclusivity was more centred on the end product, the poems themselves. Many of the contributions under this sub-theme noted that the experience of reading the poems as an artistic output, especially when read all together, felt overwhelming:
“…perhaps highlighting individual poems at different times might be an option. Because it’s quite a lot all together, and that’s one of the reasons why I think it’s been more difficult to share with people, with friends and family, because it’s a whole volume.”
(PCA.C-England).
Many of these discussions focussed on the highly emotive material within the poems, and also prompted discussions about other means of dissemination, potentially only asking readers to read one or two poems in one go.
3.4.4. Sharing the Poems
This final theme brought together contributions about what to do with the poems once they were completed and published as a collection.
Value as activity vs. value as product
Many of these discussions were prefaced by discussions around whether the end products of the research poetry task had value outside research poetry’s initial value as a research exercise.
Where and how to disseminate
Those conversations moved on to wider discussions of how and when to disseminate the poems. Books, dementia websites, radio broadcasts, YouTube and adverts on the tube were just some of the suggestions put forward by participants. Many also suggested that they should be given to medical and health professionals as a means of education:
“I think of educating people […] it seems like I would be more willing to […] take the book, say to my husband’s physician office than I would be to give it to one of the people closest to me.”
(FTD.C-Canada)
Risks and benefits of sharing the poems
One final sub-theme that came up regularly during these discussions was the idea that there were risks inherent to the process of sharing the poems. Many of these discussions focussed on the idea that one might only want to share them with people, such as professionals or really close friends, who were capable of understanding the complex emotions within the poems:
“Yes, I’ve actually not shared it very widely at all. I shared the book with a friend who is a nurse practitioner actually. I’ve been very careful about who I’ve shared it with, because it’s been an emotional journey really. And I think it’s a lot for people who don’t have experience of any sort of dementia.”
(PCA.C-England)
3.4.5. Group Interviews: Narrative Synthesis
Group interviews, carried out in both the UK and Canada, offered participants opportunities to talk freely about their experiences of a novel methodology, their personal responses to the poems themselves, and possible ways the poems, as outputs, might be shared. The interview findings seemed to indicate that the process of putting the poems together had been a powerful one, providing space to both explore and express complex feelings around individual experiences of dementia care; this was also reflected in the stakeholder surveys, reported earlier. Discussions about what to do with the poems now they had been created almost became a creative activity themselves, with many different (and varied) methods of dissemination tabled and workshopped by the groups. Many participants described their worries ahead of taking part in the research poetry task as well as the rewarding nature of challenging themselves to engage with the activity despite that. The surprising relationship between lived experience, reflection, emotion and meaning making were topics that came up regularly throughout the focus groups. The overall experience of the activity was described by participants as an opportunity to engage in something new, it had given them a new way to look at their experiences, and as a group, to connect to each other through the written word.
3.5. Healthcare Professionals and Student Survey
Throughout the research, poetry process feedback from participants included curiosity as to how the poems would be disseminated including awareness raising or educational opportunities. Our own interest was reinforced and consequently we initiated an additional component of the study to explore the acceptability and usefulness of co-constructed poetry as a learning tool for healthcare practitioners. Although few, similar studies, e.g., [66,67], have suggested that poetry, as a supplementary learning tool, offers students an opportunity to reflect on more holistic views of lived experience, furthers their understandings and ability to engage in critical thinking, and stimulates changes in learner disposition (i.e., emotion). Thus, poetry may be valuable to address both Bloom’s taxonomy of cognitive learning [68] and Krathwohl’s taxonomy addressing the affective domain of learning [69]. The cognitive learning taxonomy, hierarchal in presentation, identifies four types of knowledge and related skills that learners are expected to acquire: factual (i.e., describe learning), conceptual (i.e., explain learning), procedural (i.e., knowledge application) and metacognitive (i.e., analyse, evaluate or prioritise knowledge) [70]. However, in affective learning, the focus is on the development of characteristics that shape thinking and behaviour. These might include, for example, compassion, advocacy, or respect [71]. As Schmidt [72] and others argue, emotions are a critical ‘force’ for any meaningful knowledge acquisition. Also hierarchal in presentation, affective learning or skills includes receiving or basic awareness, responding to the learning, evidence of valuing the information received and organising value systems, and finally demonstrating values as impacting behaviour [69].
The sample is set out in Table 2. After cleaning the data (n = 101), we obtained a final sample of 93 participants (professionals, n = 55, and students, n = 38) who completed the survey. The majority of participants were female (n = 69), not uncommon in the professions represented, and between the ages of 30–49. Students were significantly younger, however. Interestingly, most of the participants had experience (practice and/or personal) with people living with dementia (n = 62), and only 27 reported either reading or writing poetry within the last 5 years. Table 8 provides survey group composition, sample size, and selected poems (see Supplemental Figure S2 for the poems). Our thematic analysis was both deductive and inductive. We first created a codebook informed by our interest in both cognitive and affective learning and critical thinking, and then added emergent codes during the coding process. This was followed by the researchers engaging in analytical discussions to identify relevant themes across the data [36,37].
It is worth noting that responses to the open-ended questions ranged from one word to over 300 words. Whilst word quantity does not confirm engagement or quality learning, arguably the poetry appeared to offer an external voice for people living with dementia and provoked or “opened a space” [73] for reflection on either practice or, in some instances, personal experience. Our thematic analysis of the survey’s open questions captured three themes specific to learning: (1) other-oriented perspective taking; (2) insight through critical self-reflection; and (3) value of dementia support. These themes corresponded with the lower to mid-order learning levels on the cognitive and affective learning taxonomies, although we recognize that these are not necessarily discrete categories [69]. We also acknowledge that these are learners’ brief written expressions of understanding rather than observed changes in behaviour because of their exposure to new knowledge [74].
3.5.1. Other-Oriented Perspective Taking
It was strongly evident that the poems provided participants with an opportunity to empathetically connect with the varied descriptions of lived experience set out within the poems. Participants in each group expressed either “imagining” the impact of experiences on the person affected by dementia and/or “feeling” similar emotions to those expressed. Whilst each poem conveyed different content on the dementia experience with some being more negative in tone than others, the poems did not vary greatly in relation to generating empathetic responses. However, some poems seemed to vary in terms of generating basic awareness of emotional content (lower-level learning) such as, “I felt the fear of the speaker” (student, Group 1), versus those where participants appeared to value the message inherent in the words (mid-level learning). For example, a healthcare professional wrote an ability to feel a “mixture of emotions” in addition to valuing the contrasting emotions and meaning in the concluding message in reference to the poem There is So Much I Could Say:
“In this poem I felt a mixture of emotions. At the start, I felt so deeply sad about the impact dementia can have on every part of life. In response to the line, ‘a slow and painful death I encounter each day’, I thought about how cruel dementia is as a disease, in which people feel themselves slowly dying and how relentless this may be. Towards the end of the poem, I felt lighter in myself whilst reading the verse ‘My husband is my best friend and soulmate. I am a lucky woman to have him in my life. He treated me like a queen for over 30 years and he is still my knight in shining armour.’ It highlighted the person, instead of just the diagnosis and I smiled at the love that was so evident in this part of the poem. I was left really thinking about the instruction to ‘Live each day as that is the only guarantee you have’ and to take life as it comes, not worry about the trivial and enjoy as much as I can.”
3.5.2. Insight through Critical Reflection
Closely associated with the poems’ generation of empathy were participant responses that demonstrated critical reflection on new learning and/or affirming existing knowledge. Overall, our findings here are consistent with Speare and Henshall [73] who, using poetry, also identified the value of reflection in relation to a practitioner’s identity and the possibilities within their role. Responses here appeared to provide higher-order learning including the participant understanding, sometimes analysing the knowledge, and active application of the knowledge in future practice. For professional participants with considerable work experience comments were sometimes more fulsome or detailed. Student participants were more apt to reference the personal experience of a grandparent living with dementia.
In terms of reflections for direct practice, a healthcare professional drew attention to active communication skills and person-centred approaches from There is So Much I Could Say:
“I think this poem reminded me to be patient when working with care recipients. There are numerous reasons why a person cannot articulate themselves well. It may or may not have to do with the dementia, but there is power in listening. Allowing the client the floor. Shows a person-centred approach to care and that your time is not more important than their experience.”
A healthcare student expressed their learning from Still Me, with a focus on dignified approaches to care and support:
“Always being mindful of sensory overload, personalized care focusing on the patient’s strengths and abilities. They are trying so hard not to be angry with themselves we MUST try too. Unfortunately, I have seen too many ‘professional’ caregivers become angry or frustrated with their patient’s/client’s limitations, this is unsupportive, uncalled for and disheartening. An example of what never to do.”
Importantly, for some participants there was critical engagement in terms of reflections on the limitations within the current arrangements for dementia care and support for people who had atypical types of dementia. A student stated the following in response to reading the poem Tumble Jumble:
“Overall, the poem reminds me of a concept called ‘medical waiting’ that I learned of in an article by Mary Hunter called ‘The Waiting Time of Prostitution: Gynaecology and Temporality in Henri de Toulouse-Lautrec’s Rue des Moulins, 1894. Medical waiting is about the anxiety one experiences while waiting for results of medical testing, and the fears surrounding the way the body will be policed or regulated by institutions after the diagnosis is delivered. To me, it seems that the impact of institutions—with their treatment protocols and the way they regulate, limit, and treat patients (both medically and interpersonally)—on the bodies, minds, and overall wellness of those being diagnosed…”
3.5.3. Value of Support
Tailored learning with respect to people living with a rarer form of dementia was evident, however, understandings specific to support and its value for anyone affected by a rarer dementia diagnosis were much more prominent. For example, When Will I No Longer Be Me stimulated the following comments from one professional which seemed to convey their responsibility to do something about support such as a village of love, acceptance or kindness: “empowerment to create understanding around dementia let’s build that old-fashioned village again. Surely it must be our role to create this old-fashioned village of care and community for people with YOD [young onset dementia]”. Similarly, characteristics of support were emphasised by a student in response to Accept this Honour:
“As with the other poems, when caring and support dementia patients, compassion and patience is key. They are not themselves, their behaviours if they have any are not who they are but a product of their disease progression and deserve compassion, love and patience.”
The poem Support generated many concrete examples of what support is necessary and captured by a student who wrote about support for the family as opposed to the more traditional focus on an individual system: “This poem describes the importance of supporting both the person with the diagnosis but also their family members as it is important to see everyone in that circle of care as important and needing support through a difficult diagnosis.”
3.5.4. Acceptability of Poetry as a Learning Tool
Although most participants did not read or write poetry, its use as a learning tool was both favourably received and encouraged—and in some instances, responses included recommendations on how to improve their use. There were no responses that discouraged the use of poetry for learning. Poetry appeared to be more accessible than traditional academic reading:
“Articles from academic journals can be so stale—clinically reporting the experiences of others and it has us looking down at them and their struggles. However, qualitative/artistic/narrative can actually have us be with the person, their experience and their struggles—have us empathise to the point of us being in their own shoes, and better understand how we can interact with them as professionals in a way that’s more humane.”
(healthcare professional)
The enhancement of empathy through poetry resonates with Muszkat et al. [75] who used poetry with medical students to understand the lived experience of being a patient.
Building on poetry’s accessibility or ability to “be in another’s shoes”, participants also offered us suggestions to extend the learning reach:
“…if it is integrated into the curriculum/supervision in ways that highlight specific issues and experiences (e.g., isolation, fear of the future, not knowing what’s next, dementia activism, different symptoms and problems). I wouldn’t just bring in poems and read them without a context though. It would be important to use them (as visual art is now used in some medical school training) to help support whatever teaching or supervision is occurring—otherwise eyes will roll and only a few interested trainees will take it on. Have the class create poems together, that’s where I might begin.”
(healthcare professional)
3.5.5. Using Poetry as a Learning Tool
Our additional investigation to explore how poetry could be used as an approach to learning with health care professionals offered additional insights for research poetry. The poems appeared to engage participants as learners for gaining insights on both the lived experience of rarer dementias as well as implications for practice. Our survey offered promising findings with respect to cognitive and affective learning around empathy, critical thinking and the conceptualization of what constituted support. Whilst the survey had limitations in terms of it not being an interactive learning tool or used in conjunction with other learning methods, it was well-received by participants and its use encouraged for future work on educational approaches for dementia practice.
[ad_2]
