This section will outline three sets of results, stemming from both the first and second rounds of analysis. The first of these is an abridged version of the narrative visual glossary (Table 1), created during the first round.
The second set of results is a table of the narrative themes and sub-themes (Table 2), followed by a breakdown of the major narratives themes therein. These were refined and finalised, based on the initial analytic framework (See Supplementary Table 1, Additional File 1), during the second round of analysis. This process largely involved researchers removing or combining certain sub-themes, in the interest of concision and clarity. The biggest change between the initial analytic framework and the final Table was the decision to remove one narrative, “Covid as Disruption (sub-narratives: Lockdown as an Interrupter/Derailment, Derailed Ability to Give back to the Community, Forced to Face up to/Manage Situation). This decision was made on the grounds that it represented a common plot point, present across many individual accounts, but that the narratives included within it were often extremely context specific, and therefore had limited transferability across other contexts or time points.
3.2 Participant Accounts
The final set of results are the in-depth narrative accounts, and accompanying line drawings, produced during the second round of analysis. These log the stories of four participants: Amanda, Helen, Julie and Diane.
Amanda
Amanda (female) was in her early forties, and caring for her mother who was in her sixties and in the advanced stages of familial Alzheimer’s disease, at the time of interview. Amanda had also undergone genetic testing herself which revealed that she too carried the same mutation. This meant she, too, would go on to develop the same condition. Amanda cared for her mother at home after returning from living overseas where she had been working as a nurse.
[Figure 1 here]
Within her interview, Amanda described an initial period of increasing uncertainty as her mother’s symptoms developed and as she became aware of these changes from afar. This caused her to embark on a search for a diagnosis and her retelling of that period took the form of a Detective Story, characterised by many “bumps in the road” (Fig. 1, A1). The interview context offered a vantage point of hindsight, allowing Amanda to clarify the changes she experienced and what they went on to mean. This insight was not available to her at the time. Amanda’s experiences of increasing difficulties were captured, in her drawing, as circles of increasing size (Fig. 1, A1). During the interview itself, she chose to the experience from her mother’s perspective.
It just became harder and harder for her to live and getting, I guess, scarier and scarier for her when she didn’t really understand what was happening to her.
This performative perspective shift contributed to the Keeper of the Torch narrative Amanda had been outlining throughout her account. In this narrative, Amanda was charged with Maintaining Identity on behalf of her mother and in doing so, enabling her to be Seen Past Diagnosis. Aside from the performative aspect, this tension was also evident in the contents of Amanda’s story. She made multiple references to mother’s characteristics before the diagnosis, and also often, in the following passage, contrasted her mother’s symptoms with more typical presentations of dementia in older people.
Trying to take mum to a day care centre where there were people in their late 70s and 80s... She wanted to...touch everything and hold everything and... She wanted to go for a walk. She didn’t want to sit down with all the old people.
The experience of witnessing her mother being Seen Past Diagnosis was also constructed, within her telling, as a marker of good examples of support.
Mum could be whoever she was that day and you didn’t have to explain. Mum wanted to go round banging the chairs or smashing things or… If I’m feeding her tea and biscuits, that was okay. Nobody gave you a second look.
Amanda described the diagnosis as a “roadblock”, and depicted it by drawing a solid black rectangle (Fig. 1, A1). This created a sense that their journey beyond that point was unknown and contingent on the support that would be available. Much of Amanda’s narrative beyond this point described Climbs and Falls, due to inconsistencies in support at multiple levels.
People say, “Oh well, these people can come and do a sit-in or these people can… Phone this number and you’ll get this help or…” You don’t really get any help. There’s no one that’s, physically, helped us, it’s just been empty promises along the way really.
The support inconsistencies described included discrepancies in the provision, availability, appropriateness and continuity. She also described inconsistencies in quality of care offered by broader systems — her experience with these was often poor — and contrasted this to the support provided by smaller organisations or individuals. These latter examples of support were often described as more helpful and supportive, with one depicted visually as a “cushion” which acted as a “soft landing” (Fig. 1, A2).
When I first met the charity, yes… I guess it felt great to actually feel like there’s a place for us.
However, even in describing more consistent support, Amanda evoked a sense of precarity, worrying that it would not be sustained. The general sense of inconsistency evoked helped contribute to an Emotional Rollercoaster narrative with many ups and downs reported throughout the interview.
It’s just the ups and downs, really. Sometimes you feel like you’ve found somebody that’s having a positive influence but the consistency isn’t there so they disappear.
It is also worth noting that Amanda’s line drawing depicted her support journey as having an overall downwards trajectory (Fig. 1, A1/A2/A3). While this account was often interrupted by loops, spirals and circular stopping points, symbolising various support groups and information received, the overall account seemed to capture the pervasive sense of “exhaustion”, with Amanda noting that her pursuing support led to “a lot of dead ends”.
The downwards trajectory (Fig. 1, A1/A2/A3) within Amanda’s account seemed also to represent other aspects of Amanda’s experience, including her mother’s symptom progression, her own energy levels decreasing, as she spent “more time chasing up things that [weren’t] going to go anywhere”. It also seemed to depict her mental health more broadly, as she experienced an “ongoing spiral of emotions”.
Much of Amanda’s account captured a sense of the responsibility (partly shaped by her nursing background) and aloneness she felt, whilst seeking support for her mother. While it featured many instances of her Going Against the Grain and Taking Action, suggesting a sense of agency and progress, it was clear, also, this experience was an “ongoing struggle” for her. This struggle was seemingly exacerbated by a feeling of being alone. We can see this in the way she positions herself and various health and social care professionals as working towards different outcomes, and coming from different perspectives:
They’re [Professionals] asking me if I’ve tried to give mum a cup of tea – she didn’t need a cup of tea at 1 o'clock in the morning when she was screaming the place down, pulling at the curtains. She was scared, terrified, and needed more medication.
Nobody would look after mum because her behavioural issues were so bad...It’s better when it is just me and mum, to be honest.
This sense of being Alone and Unsupported was also reflected existentially, in Amanda’s description of the uniqueness of her broader situation due to the genetic nature of the dementia within her family. The complexity of Amanda simultaneously being a care-partner, as well as a pre-symptomatic mutation carrier, for the same disease, creates a dual role for Amanda. This, in turn, complicated her experience of facing the future. For example, Amanda described the challenges, and sense of isolation she felt, when joining support groups as a care-partner, whilst knowing that she would go on to become a person living with dementia.
It is really good having these groups but, in another way, it can feel more isolating because there isn’t actually anybody that I’ve found in the same position as I am.
This was also captured in the development of Amanda’s story. As the interview progressed, she increasingly referenced a time beyond her mother’s support journey with projections into the future relating to her own imagined support experience.
I know what I’m trying to give mum and I want somebody to try to do that for me too...seeing what’s out there just terrifies the life out of me getting it when it’s my turn.
Helen
Helen was in her mid 50’s and was interviewed at home where she lived with her husband, her tortoise, and pug. They had two sons who had left home but both lived locally. She received a diagnosis of bvFTD four years prior to the interview, after a series of assessments with medical professionals. Before her diagnosis, both she and her husband had been working full-time, but Helen had since had to stop working and driving.
[Figure 2 here]
The interview showed an interaction between Keeper of the Torch and A New Reality narratives, although aspects of Detective Stories, Climbs and Falls and Taking Action were also present. Helen articulated attempts to preserve her changing identity in relation to her husband, medical professionals and others living with dementia. Before diagnosis, she explained how she had “done my same job for years in a school office and I was just getting a bit muddled with some things. It was a bit odd, just something wasn't right, feeling right.” She described the steep drop from the left edge of her drawing before diagnosis (Fig. 2, H1) as “just very low feeling”, “driving to work feeling like I wanted to end my life every day. It was ridiculous”.
This despairing situation was expanded on, as Helen performatively recounted a story of the day she received a diagnosis. In the passage Helen presented herself as a character, using speech, asides, and the humour of a coincidental video recording to recollect that devastating moment in time. The story highlighted the confrontation between her seemingly illusionary hopes for Maintaining Identity and the interruption brought about by A New Reality of a diagnosis for her and her husband.
“The day of my diagnosis is ever so funny because I don't know why, at the time, I did this little video of myself. I’ve still got on my phone saying to my husband, ‘Hi M (name of husband), I've had a phone call from’ […]’And everything's fine. My brain is absolutely fine. Nothing to worry about, blah, blah, blah, love you,’ you know, that, sort of, thing.
And then within no time, that's when I found out, over the phone as well; over the phone, mind, one to one, not even with my husband at my side, that there was a diagnosis”.
A feeling of being let down when Dealing with Professionals around the time of diagnosis was something Helen came back to many times throughout the interview, with Helen and her husband having to do a lot of detective work. Helen recalled how she and her husband “knew everything wasn’t fine” even when professionals told them otherwise.
I felt like it was almost as if I was making it up. That's how I felt. I know that sounds silly. But, I thought, ‘Why don't they believe what I'm saying?’
The moment of diagnosis, after all of their joint detective work, was also recounted as Double Edged.
I know it sounds ridiculous, but it was almost a relief when I got a diagnosis initially, to know what was going on, but then obviously afterwards, I thought, “Well, no, actually it's not relief, is it?” It's a bit stupid to think that.
Helen's recognition of the importance of Peer Support and the process of Taking Action to support others was evident in the way she described her post diagnostic journey, particularly in how she articulated the feeling of being overloaded with information and the comparative benefit of meeting with peers.
Then I can remember getting loads of stuff in the post, loads and loads of leaflets, ridiculous amount of stuff.” […] “I honestly think the most helpful thing to people and their partners with it is to meet other people in similar situations because they're the ones that can advise you on all these different things.
The practical help Helen and her husband received from peers led to Helen Taking Action in her community and acknowledging the range of experiences of people in their situation.
I liked doing that, being involved as much as I can to do things, to raise awareness, especially for the friends I've met with far worse situations than me.
This consideration of, and connection with, others had a positive effect on Helen, evidenced in the stability and flatness of her drawn line (Fig. 2, H2) which Helen described as “feeling better and feeling like me”.
Sadly, the value of peer support for stability and Maintaining Identity was complicated by the COVID-19 pandemic, and the resulting drawing (Fig. 2, H3) showed steep, sharp Climbs and Falls and a rollercoaster of emotional ups and downs. Helen communicated that the ups in this drawing represented moments when she was active or enjoying time with other people. This, however, was contrasted with the difficult downs: “But the low days, as well, as the line is down. They just happen all of a sudden, I don't have any control over it”. The despair of the situation was also rendered vividly at the beginning of the interview: “you can't get out of your head. And it’s just, like ‘Oh, I'd be better off if I wasn’t in this world.’”
This challenging and tumultuous situation was expanded upon in a further story, which gave deeper insight into Helen’s difficulties with maintaining and understanding her changing self. This was possibly related to her specific diagnosis (bvFTD), leaving her feeling Alone and Unsupported. The story also highlighted the potential tension and strain this might cause to her relationship with her husband.
I get told off sometimes for being too out there saying everything I think, […] My husband says to me, “[Helen] you can't do that all the time now.
Helen, at the time of the interview, seemed to have been finding things difficult, particularly in confronting her dementia diagnosis and Facing an Uncertain Future. Her friends, family, animals and peers contributed greatly to a positive and stable mood, and although Helen twice articulated deep discomfort with herself in the world, towards the end of the interview, she highlighted a key resolution and action towards her future and A New Reality, “I just think, I'm not giving into it, I like to keep as active as I can and as busy as I can.”
Julie
Julie was in her early sixties and living on a farm in the North West of England with her partner at the time of interview. She had received a PCA diagnosis six months previously and first noticed symptoms (a loss of ability in her left hand) three years prior to that.
[Figure 3 here]
Yes. It was like an explosion. It was not an immediate explosion, over a period of maybe a year or so, where all this was happening that I couldn't understand what was happening. And then, as the journey progressed, with the assessments, and everything, I started to get a little bit of understanding, and then the huge relief […] when I got the diagnosis. It would have been better to have found there was nothing wrong with you […] And losing all my abilities for anything administrative, or numeracy, some literacy […] I've been self-employed for most of my life, all the things that I pretty much lost, was everything I needed. […] that's what those little lines represent, with all these little things that came together, to make this big thing of the build-up. And then, when I got the diagnosis, to be relieved to understand. (Fig. 3, J1)
Here, Julie described an accumulation of unexplained symptoms, knowledge gained from professionals and finally an explanation, in the form of her diagnosis, typical of Detective Stories. Julie’s relief and disappointment at the diagnosis also exemplified the Diagnosis Double-Edged theme.
The passage, along with Julie’s assertion that she has been self-employed “most of [her] life”, also displayed elements of Burden of Maintaining Identity, particularly in how it dealt with Julie’s perceived loss of ability and the ways this impacted her work. Julie losing certain abilities didn’t just raise questions. It contributed to a shift in her self-concept.
Julie’s preoccupation with the loss of abilities pertinent to her job came up multiple times elsewhere. She took care to rephrase the prompt, “think back to when you first noticed that something was wrong” to “when I first noticed things were going wrong with my abilities” before drawing her line. The sense, within Julie’s account, that her lost abilities were connected to her fragmented sense of self was also rendered in the line drawing (Fig. 1, J1), in her own words “an explosion” of “little lines” which eventually came back together at the point of diagnosis. Julie even framed the interview context, the act of line drawing itself, as symbolic because she had to use her right hand.
Thinking in terms of how Julie performed her own story, it was evident that her concern with maintaining elements of her own identity affected the way she described her experience.
Because I'm a very curious individual, and I ask a lot of questions, and that's the way I've been all my life
Here, she explained how her own self-concept as a curious person gave her a sense of agency during the diagnosis seeking process. Julie then went on to narrate the Climbs and Falls of her post-diagnostic journey, whilst continuing to incorporate elements of Keeper of the Torch.
The support has gone and grown from sitting with Doctor X and him actually saying, "I'm going to do this for you." […] But you're so sceptical in life now. You think, "Oh, yes." […] this will happen in- Christmas is coming up, people are on holiday, but I thought, "If somebody rings in January, that will be fantastic." So, to find from talking to him, within several days, before Christmas, we've started that climb.
This passage contained one of many instances wherein Julie portrayed her rare dementia journey as atypical. She was pleased to find her expectations around waiting for support subverted. The short timeframe was also rendered in her line (Fig. 3, J2), something she prefaced by saying “you won’t believe this” to the interviewer.
…and the whole thing is just continuity all the way through. So, I feel, from what I've heard from others, I won't say I've been exceptionally lucky, but it feels like I've been exceptionally lucky with that support that I've had, with information.
Here, Julie drew again on her understanding of rare dementia support journeys, marked by a lack of continuity, before illustrating the atypical nature of her own experience. In this way her narrative both evoked a received narrative around inadequate support structures (that Julie was “lucky” to have fared better), whilst modelling a preferable alternative.
The narrative theme Seen Past Diagnosis was also prevalent in Julie’s account, and in a way which spoke directly to Julie’s Burden of Maintaining Identity during her pre-diagnosis journey. The pre-diagnosis journey represented three years, but was rendered without much detail. For example, Julie’s interactions were described as “assessments and everything”. Here, however, despite the timeframe being shorter, time seemed to dilate during Julie’s telling. She met with more professionals, doctors, an occupational therapist and staff members at two dementia charities, but these interactions were rendered as detailed scenes with distinct characters, lots of reported dialogue and inner monologue.
So, she has helped with […] practical solutions, but also […] the mental side of things, but that side of things where she will say to me- she worked me out quite quickly.
Race along at 100 miles an hour, get jobs done, bit of a perfectionist […] she put it to me was, "It's a journey. And we're going on this journey together. And let's say we're at the railway station. Instead of hopping on the next train, why don't we hang around for a bit, and have a cup of tea."
Julie ended her story on a hopeful note, bringing attention to her present situation. She used her line drawing (Fig. 3, J3) to indicate that she was still experiencing life as a series of Climbs and Falls but highlighted, also the important support she received, from various professionals, in making sure those challenges didn’t become overwhelming.
Those little hooks are actually depicting me […] obviously, on this journey, on this mountain that I'm climbing where I've got the support, and we're getting- I'm not saying we're near the summit, but we're starting to see the lovely bright sunshine, and the snow-capped tops. This is me having my days of, "Oh, goodness me." […] that's not me wallowing, by the way, with anything, in any way.
But to show a truthful line, it’s not a straight line, but it's a climbing line because all of you guys, every single one of you, excuse me, have actually kept me on the mountain path. So, I haven't strayed too far off-piste.
Diane
At the time of the interview, Diane, in her mid-50s, lived at home with her husband. Married for 27 years, they have no children from this relationship. He began experiencing symptoms about 3 years ago and was subsequently diagnosed with young onset Alzheimer’s disease after 2 years of multiple healthcare assessments. Both had been working full time prior to the diagnosis.
[Figure 4 here]
Shortly after taking early retirement, her husband became abruptly aware of symptoms when travelling alone on two flights. Calling Diane from the airport she reported, “He was crying. He was upset. He couldn’t cope with doing that, even though I had set everything up for him. I had coached him along via text messages and calls”. This travel day was noted as the beginning of the “intense” emotional Climbs and Falls that continued to occur for both of them. This sense was also reflected in her verbal and visual telling of her story.
“Now in retrospect I might have written a line straight across, sort of indicating even keel, you know, excited about the future. When I started noticing changes, there was one incident in particular that just boom, I just dropped right to the bottom, almost as far as I could go.” (Fig. 4, D1)
When asked more about her line, Diane said “The first indicator is the line up, it was more relief, him admitting and wanting to seek help.” From childhood onwards Diane described herself as someone who “tries to figure things out on my own”, which has been a key component of Maintaining Identity. Asking for support, she suggested, had always been difficult. Throughout Diane’s life, she relied on herself to organise and find solutions to things that came her way. Her husband’s acknowledgement that there was a problem allowed her to continue in a role that was familiar, but also include him at an early point in the dementia journey. This sense of inclusion and joint distress is most exemplified in Diane’s telling by her use of the pronoun, “we”. Referring to her drawing, Diane state that “the ups and downs in that period would be, ‘Who are we going to see? Who are you most comfortable with seeing first?” (Fig. 4, D1). In a moment of evaluation, she reflected as a carer how her husband’s symptoms had affected her, “This is an indicator…No, I wasn’t as up and down. This indicates a lot of his emotional up and down which affected me.” This distinction is important but often difficult for care-partners to acknowledge, and evidenced her ability to understand how her husband’s emotional reactions affected her.
Having to get things right, A Keeper of the Torch, often feeling Alone and Unsupported, was how Diane positioned herself in the absence of family or professional support where she “took action” and searched for a diagnosis in a healthcare system that provided no care pathways for the symptoms her husband was experiencing. “I can keep it together”, a familiar self-telling, whilst reassuring, resulted in increasing stress after the diagnosis began to sink in and the Climbs and Falls re-emerged: “Then the plunge down again with, oh my God, yes, this is true. This is what we are dealing with.” The diagnosis became a transformational crisis point, challenging her long held beliefs around needing to figure things out by herself.
The first blip would be a mix of emotions. Almost elation that we can now move forward and figure it out. Then I move into action mode. We are going to do this, this and this. I’ve got the support. We need to ask people questions. We need to, I need to access…That’s the straight line. I didn’t make it very long because it’s not continuous for me, in the sense of I can’t keep strong all the time (Fig. 4, D2).
Going forward after the diagnosis, and initially in partnership with her husband (again as exemplified by use of the pronoun, “we”), Diane suddenly slowed her telling, hinting at her vulnerabilities and becoming aware of limits to her resilience but also of the need to seek support. Here, interestingly, she started using the “I” pronoun more frequently. The healthcare context was also very much part of her story and seemed to shape her empowered, self-positioning: “I access my people, because there is no navigation line or navigation system for this kind of diagnosis in our healthcare system in Canada… Here you are totally on your own.” She used her line to depict the importance of her own action, when it came to seeking support: “ I think the straight line indicates my steadiness at reaching out, getting that initial support, whoever that might have been. I could forget about the ups and downs and simply stay on course for that period of time” (Fig. 4, D2).
Pointing toward the arrow in Fig. 4, D3, Diane described her journey seeking support for herself and her husband over “this last year [as] particularly difficult when here, for example, the stress level for me was unending”.
These are showing ups, downs, like super stressed dropping down to bottom. These sorts of low ebbs are indicators of my mood. Feeling hopeless. Feeling helpless. The sense of loss…the selfishness, you know, you shouldn’t feel that way…As well as I think the heavier lines indicate that I’m kind of in this by myself because he doesn’t have the capacity to understand. Yes, so there was a lot of ups, and my ups are not good ups (Fig. 4, D3).
A New Reality of her role as a permanent caregiver hit her extremely hard, and whilst there was no resolution, Diane recognised she no longer needed to do it alone.
The transition between, ‘Okay. This is our life.’ My role now is a caretaker for the rest of it. The hopes and dreams that we had together are no longer…But as my end line, it does not mean it is complete and it is put away...So this indicates sort of the up and down of going out of my comfort zone asking for help as well as the emotional piece that goes along with that. Yes, the emotional pieces of loss, grief, having to do it all, or thinking I do. Having to let that go. (Fig. 4, D3)
Diane’s story depicted a person encountering many external and internal challenges across this period of time. This included engaging a healthcare system with little or no understanding of this type of dementia. Within this context she positioned herself, not as a heroine, nor as a victim, but as someone who increasingly realised that her identity as a care-partner was becoming permanent. Also, importantly, reaching out to others was not depicted as a weakness. This insight was a form of resolution for her, even though her journey continued to be one of both Climbs and Falls (Fig. 4, D3).