Former dementia caregivers’ high and low point narratives: what is remembered, and how is it shared?

Abstract

Objectives:

To characterize core themes conveyed by caregivers when sharing narratives of high and low caregiving points and to describe how caregivers structured these narratives.

Methods:

Using consensual qualitative research and thematic analysis, high and low point narratives from 32 former caregivers of persons living with dementia were examined.

Results:

High point narrative themes involved strengthening relationships with care partners, fulfillment derived from care, lighthearted moments, and fostering the care partners’ joy and dignity. Low point narratives involved family conflict and lack of support, personal deficiencies, loss of the caregivers’ ‘pre-caregiving’ life, health system failures, and alienation from their care partner. Across high and low points, caregivers’ narratives were structured by three types of narrative elaborations; details unnecessary for factual recall but which enriched narrative sharing.

Conclusion:

Themes across high and low point narratives encompassed relational issues, how caregiving shaped the caregiver’s self-efficacy, and factors that made navigating caregiving easier or more difficult. Both high point and low point narration often involved describing positive aspects of caregiving (PAC). Narrative elaborations may be used by former caregivers to engage in deeper evaluation of their caregiving experiences. We consider how psychotherapeutic techniques can help former caregivers reframe maladaptive narratives, supporting their mental health.

Introduction

In a metaphorical book that contains our life story, we have multiple ‘chapters’ in life such as childhood, our time in college, or retirement (Thomsen et al., 2016). Over time, chapters combine to inform one’s narrative identity, or the personal, ever-evolving story of oneself and one’s life (McAdams, 2018), and features of these chapters can influence wellbeing (Thomsen et al., 2016). For many adults, family caregiving for a loved one with dementia is one such chapter. Gradually, caregivers develop a story of their ‘self’ as a caregiver, expanding and enriching their narrative identity (Ayres, 2000; Mroz et al., 2023; Yu et al., 2018) based on their caregiving chapter. To do this, former caregivers make meaning by integrating, or pulling together, pre-conceived expectations about caregiving and interpretations of events from caregiving experiences (Ayres, 2000). As such, to understand the impacts of caregiving for person living with dementia (PLWD) on wellbeing over time, caregivers’ in-the-moment evaluations of their caregiving experiences must be complemented with understanding of their integrative, retrospective narration of their caregiving experience (Fabà et al., 2023). The current study addresses how caregivers of PLWD tell personal narratives of salient events (i.e. high points and low points) from former caregiving roles.

When asked to evaluate their caregiving experiences, caregivers of PLWD describe both positive and negative aspects of caregiving (Lloyd et al., 2016; Wang et al., 2022). For example, some caregivers report psychological growth or enhanced connection with their care partner (i.e. the family member, friend, or close other whom they are providing care to) as positive consequences of care activities (Lloyd et al., 2016). Identifying PAC is associated with lower depression and a higher quality of life (Quinn & Toms, 2019). However, caregiving for a PLWD may also be difficult: caregivers can experience substantial stress, even compared to caregivers of those with other illnesses or disabilities (Sheehan et al., 2021; Vick et al., 2019) and can describe their caregiving experiences negatively (e.g. Shim et al., 2012). Currently, little is known about how caregivers develop and structure personal narratives to incorporate positive and negative aspects in an evolving caregiving life story chapter; this limits our ability to support former caregivers to develop caregiving narratives that support constructive life stories and mental health.

Guided by a narrative identity framework (McAdams & McLean, 2013), this study examines caregiving personal narratives, recalled after the loss of the care recipient (CR). While we acknowledge that some experiences from caregiving are objectively difficult (i.e. experiencing abuse from CR, Kong, 2018), most are neither completely, inherently positive nor negative, but rather imbued with meaning over time (Mroz et al., 2023). Thus, objective aspects of one’s caregiving experience may only partially account for the impact of these experiences on the caregivers’ mental health over time (Vanaken et al., 2021). The ways that caregivers shape and share narratives from experiences may also guide mental health outcomes (Cox & McAdams, 2014; Fabà et al., 2023; Weeks & Pasupathi, 2011). For example, framing a caregiving narrative around lack of choice to adopt the caregiver role is associated with lower life satisfaction and higher emotional distress (Schulz et al., 2012), whereas framing a narrative to emphasize PAC is associated with lower self-reported depression and burden (Cohen et al., 2002).

Current study

In the current study, we prompted former caregivers of PLWD to share high point and low point narratives. These types of narratives are considered central to adults’ narrative identities: they capture salient episodes within a given life chapter and can guide mental health outcomes following challenging events (Cox & McAdams, 2014). We present a qualitative analysis of high and low point caregiving narratives recalled by midlife former caregivers of parents living with dementia. We focus on two interrelated aspects of narrative sharing: a) core themes, capturing the essence of what is conveyed by the narrative, and 2) and narrative structures, capturing approaches narrators take to construct the narrative they share. Two research questions guided this study: what core themes are found in former dementia-caregivers’ high point caregiving narratives and their low point caregiving narratives? (RQ1); and what narrative structures scaffold these former caregivers’ narratives? (RQ2).

Methods

We conducted a multi-layered qualitative analysis of semi-structured interviews with adult children who were former caregivers of PWLD. We followed the COnsolidated criteria for REporting Qualitative Research (COREQ; Tong et al., 2007) guidelines for presenting our methods and results. The senior author’s Institutional Review Board reviewed and approved this study.

Participants

Participants were recruited between October 2021 and February 2022 through national caregiving networks, distribution of flyers, social media websites (e.g. Reddit), and research recruitment services such as Research Match. Research Match is web-based service supported by the National Institute of Health. It is designed to link study participants with studies in the United States by collecting users’ health information and disseminating information about IRB-approved studies. Use of such services helped researchers collect a purposive sample that was relatively equally distributed across male and female gender identification, given the underrepresentation of male caregivers in research. Inclusion criteria were U.S. citizens aged 40 to 65, chosen to represent middle adulthood (Staudinger & Bluck, 2001) and ensure a focus on parent-child relationships. This allows for homogeneity, as differences in age and relationship to the CR can affect findings. Further, participants must have served as a primary caregiver for a now-deceased parent with advanced dementia three months to three years prior to study participation to allow time for processing their loss, while being recent enough to minimize differences across participants arising from time since loss. Participants were excluded if they did not speak conversational English. The final sample comprised 32 participants. Participants were compensated with a $25 gift card.

Study design and team

This study utilized both consensual qualitative research (CQR; Hill & Knox, 2021; RQ1) and reflexive thematic analysis (Braun & Clarke, 2022; RQ2) approaches. CQR is an inductive process that delineates domains that meaningfully capture themes describing the content embedded in narratives of participants’ lived experiences. This process has been widely used to inform psychotherapeutic practices (Hill, 2015). Reflexive thematic analysis focuses on describing underlying meanings in patterns of data (Braun & Clarke, 2022). It was applied as a second layer of analysis to explore patterns of narrative structures (RQ2) once themes of high and low point narratives (RQ1) were defined.

Consensual qualitative research

CQR guidelines recommend the use of a large, diverse team of coders and auditors. The coding team consensually builds themes together to address research questions, and the auditors work outside the coding process to ensure themes are clear, accurate, and unbiased. Our team involved five coders and two auditors. All team members provided positionality statements to address personal biases (see Supplemental File 1). Throughout coding, team members corrected biased ideas to ensure findings for RQ1 accurately represented narrative themes.

Reflexive thematic analysis

Following established thematic analysis procedures (Braun & Clarke, 2006), two coders from the CQR team analyzed transcripts and an additional CQR team member validated the coders’ findings. This process resulted in a codebook describing narrative structures. The validator reviewed the codebook and applied it to a subsection of transcripts to ensure that the codebook accurately captured narrative structures.

Procedure and data analysis

Data collection

To ensure study feasibility, the interview guide was pilot tested with three female former caregivers of parents with dementia. These pilot participants provided minor feedback about pacing and wording. All participants received the interview guide before the study session. Interested participants completed a screening via Qualtrics or over the phone. Those eligible were interviewed by the senior author who has experience with qualitative interviews. The interviewer first provided information about herself and her credentials. Then, participants provided verbal consent and answered demographic and background questions which the interviewer recorded. During the interview, participants were prompted to describe up to two high and two low point narratives. To balance valence of narration, half the sample was prompted to provide high point narratives first (n = 17), while others were prompted to provide low point narratives first (n = 15). The high point narrative prompt was:

People who care for loved ones with dementia usually carry out many tasks and offer their support to their loved one in lots of different ways. Can you recall specific times while you were caring for [your parent] where you felt like certain tasks, supportive acts, or responsibilities were easier than others for you, satisfying to you, or rewarding in some way? You can think a bit about the experience to get a sense of the details in your mind, then share when you are ready.

The low-point narrative prompt mimicked the structure of the high point prompt, but instead inquired about points that ‘felt really hard’ such as things that ‘required learning a difficult skill, led to unwanted conflict, were really stressful, or took up a lot of time.’ After participants shared one narrative, the interviewer prompted for a second. During the participant’s sharing, when appropriate, the interviewer probed with questions such as: ‘Why did you pick that memory as one that stood out to you as a time that was particularly [rewarding/satisfying/easy; difficult/stressful]?’On average, interviews lasted 92 min (SD = 25.30). Interviews were transcribed using a professional transcription service that was double-checked by the senior author. Participants spoke an average of 6,812 words during the interview (SD = 3,216). Transcripts were managed using NVivo 12 software.

Consensual qualitative analysis

Because RQ1 involved defining themes within high and low point caregiving narratives, we first ascribed two broad domains, caregiving high point narratives and caregiving low point narratives, labeling relevant excerpts in transcripts. As per the CQR process (Hill & Knox, 2021), coders reviewed these excerpts and generated core ideas, or concise summaries of participants’ statements. Core ideas were utilized in cross analysis, a step in which coders reviewed core ideas across all transcripts to create categories for each domain. The team then consensually determined final categories of high and low point narrative themes, and categories were audited.

Reflexive thematic analysis

RQ2 involved exploration of narrative structures used to narrate both high and low point caregiving narratives. As such, researchers identified patterns of structures common across both high and low point narratives as opposed to focusing on the content of the narrative (i.e. differentiating by high or low point). Coders open coded 16 transcripts and identified salient structural elements as related to RQ2; coders then reviewed open codes and used principles of thematic salience (i.e. repetition, reoccurrence, and forcefulness; Owen, 1984) to determine patterns (i.e. themes and sub-themes) to incorporate into a prototype codebook and apply to all transcripts. Coders independently coded all transcripts using the prototype codebook. Through this process, they revised the theme and sub-theme names and descriptions. Once all themes were solidified, the team’s primary auditor validated the codebook’s themes and subthemes by re-coding 10 transcripts and comparing coded transcripts to the two coders’ transcripts. The team then used axial coding to finalize theme names and definitions.

Results

The sample consisted of 14 male-identifying participants (43.8%), 17 female-identifying participants (53.1%) and 1 non-binary participant (3.1%). The mean age of participants was 56.9. The mean age of the parent at death was 84.1 and mean time since the parent’s death was 15.3 months. The mean caregiving length was 85 months. The sample consisted of 28 Caucasian (87.5%), one Asian (3.1%) and two African American (6.3%) individuals. 29 identified as Non-Hispanic (90.6%) while three identified as Hispanic (9.4%). See Table 1 for further information. The authors note that due to the data collection timeline, high and low point experiences were defined by both COVID-19 and non-COVID experiences, which may have influenced participant’s narratives. Results should be interpreted within this historical context. To explore results, our 18 quotes, included below, represent 16 out of 32 sample participants.

Table 1.

Demographic information.

Construct	Value: no. (%) / M (SD)
Participant mean age	56.90 (6.06)
Participant gender
Male	14 (43.80)
Female	17 (53.10)
Non-binary	1 (3.10)
Parent mean age at death	84.09 (7.02)
Parent gender
Male	9 (28.1)
Female	22 (68.8)
Mean time since parent’s death, in months	15.25 (12.40)
Mean length of care for parent, in months	84.90 (56.00)
Participant race
White/ Caucasian	28 (87.50)
Asian	1 (3.10)
Black/ African American	2 (6.3)
Other	1 (3.10)
Participant ethnicity
Hispanic/ Latinx	3 (9.4)
Non-Hispanic/ Latinx	29 (90.60)
Participant marital status
Single, never married	11 (34.40)
Married	19 (59.4)
Widowed	1 (3.10)
Divorced	1 (3.10)
Participant completed education
High school diploma/ GED	6 (18.80)
AA/ AS	5 (15.60)
BA/ BS	11 (34.40)
Master’s degree or equivalent	7 (21.90)
Doctorate degree or equivalent	3 (9.40)
Participant employment status
Employed full time/ self-employed	17 (53.13)
Employed part time	5 (15.60)
Retired	7 (21.90)
Unemployed	3 (9.40)

High and low point themes

Our first research question, explored using CQR, was: what core themes are found in former dementia-caregivers’ high point caregiving narratives and their low point caregiving narratives? Although participants described a variety of events from caregiving, only a few core themes were consistently found across high and low point narratives.

High point narrative themes

Participants shared narratives that included the following themes about high points from caregiving: repairing and strengthening the relationship with the PLWD, fulfillment derived from care, lighthearted moments, and fostering joy and dignity in the PLWD. Former caregivers often focused on occasions when their parents’ need for their support was most poignant, and where their sense of satisfaction through their caregiving was most evident. Narratives were almost exclusively focused on dynamics between the participant and their parent, and rarely involved other social dynamics (e.g. siblings, clinicians).

Repairing and strengthening their relationship

Caregivers described high points that illustrated how caregiving allowed for repairing and strengthening their relationship with their parent. Some participants shared that caregiving gave them new opportunities to strengthen their connection to their parent or make up for time lost if they had previously distanced themselves. In some cases, this relational repair occurred when parents expressed appreciation for the participants’ care, particularly if parents had not frequently thanked them in the past. For example, one participant shared:

At night when he would recognize and be able to thank [me]. That part was special. It made [me] realize he had some understanding of [what] was going on. For me, it’s a genuine way to show someone that you love them. I didn’t need a ‘thank you,’ but I wanted, on some level, for him to know that it was me.

For others, their relationship with their parent was positive before caregiving, but the caregiving experience expanded their relationship in satisfying ways. Some participants recalled specific times when their parents seemed more lucid or clear-minded, and the participant had an opportunity to see past their diagnosis. Some went further by describing their relationship as having evolved after witnessing their parents’ personal growth in the face of illness-related challenges. On these occasions, participants described their parent’s illness as a new and impactful phase of life, rather than as mental and physical decline.

Fulfillment derived from care

Participants further used high points to convey fulfillment they derived from care. Participants described accomplishment or pride in their ability to care for their parents. Fulfillment sometimes also occurred when objective challenges or hurdles (e.g. managing finances, family dynamics, or navigating complex health care systems) were overcome by the participant. For instance, one participant shared:

I really felt comfortable with takin’ over [my mom’s] financial stuff. […] helping her consolidate, get her arms around this mess that she had and all these different accounts […] That to me was incredibly satisfying, because I was able to help her […] I was able to do that, redirect her money so that I was able to pay those ridiculous bills.

Lighthearted moments

Participants also emphasized lighthearted moments through high point caregiving narratives. These were often experiences where their parent was acting humorously, particularly if the parent was behaving in ways they may not have prior to their illness. Not only did these narratives highlight the joy that could be found in caregiving, but they also showcased participants’ abilities to reframe odd, frustrating, or disturbing experiences to remember their parent positively. For instance, one participant laughed as he described these occasions where they observed their father’s odd behaviors:

The funniest thing: [my dad] would walk past the fruit bowl and see a banana and say, ‘A banana. Can I have a banana?’ I said, ‘Go ahead, Dad.’ ‘I can’t eat that. It’s too much. I’m gonna eat half of it.’ Maybe an hour goes by. He comes back. He looks down. ‘Who the [expletive] left this [expletive] banana in this bowl, half eaten?’ I’d say, ‘I don’t know, Dad. Go ahead and eat it. It was probably one of the kids,’ and we would go through this same script every single day.

Fostering joy and dignity

Finally, participants responded to the high point narrative prompt with narratives which demonstrated a focus on fostering joy and dignity for their parent. Participants often described how rewarding it was to not only help their parent handle activities towards basic functioning, but ensure their parents were able to continue participating in their favorite activities, enjoy their favorite meals, and connect socially with others. For example, a participant shared:

When I would get him out and about, [my dad and I] would go on a little drive. He was a private pilot. We would go over by the airport to where his airplane was. […] Open the doors, this, that, and the other. Just [that] little thing that I knew was a part of him that he would enjoy. That’s not really physical care, but I think [it], kinda mentally helps.

Often, the activities that were described as fostering joy and dignity were those that reflected their parents’ personalities (e.g. helping them dress up because they liked to look put together), culture and social roles (e.g. supporting them to make meals because they showed love through cooking), and skills and interests (e.g. offering books to parents who were avid readers).

Low point narrative themes

Analyses revealed five themes from low point narratives: family conflict and lack of support, personal deficiencies, loss of ‘pre-caregiving’ life, systemic failures, and alienation from their parent. Though narratives often focused on the participant and/or their parent, other social dynamics (i.e. with family members, clinicians, care community staff, etc.) were often emphasized, in some cases to describe support that made low points less difficult to navigate. Throughout all low point narratives, the tone of narratives varied widely. Some emphasized defeat, harm, or burden. Others included positive takeaways, such as triumph, growth, or overcoming of obstacles.

Family conflict and lack of support

Participants who described family conflict and lack of support emphasized how social dynamics made caregiving more difficult. In some cases, participants described when they felt abandoned, helpless, or under-supported by family members, increasing their sense of burden. Other times, participants described how family members undermined their care efforts or made care decisions more complex. In both contexts, participants described feeling lonely or isolated and that they could not trust or work with family members to address their parents’ needs. For instance, one participant noted:

Dealing with [my siblings] on the court matter where they made an appeal to cancel the directives that he had put in place, that was difficult, and that felt unfair. I was helpless, and I couldn’t do anything about it. I didn’t want to spend so much time and energy fighting [my siblings] that I did not have what I needed to be there for my dad.

Personal deficiencies

In contrast, some participants focused on personal deficiencies through narratives of low points. Some participants described an inability to juggle multiple caregiving roles (e.g. simultaneously caring for a parent and child), lingering guilt over not knowing what to do in emergency or novel situations, or regret about inadequacies in addressing their parents’ needs. For example, a participant described:

My mom lost her ability to walk up and down steps in the middle of the stairs outside. It was cold, mom was very sensitive to the cold. She goes, ‘I’m not doing this anymore.’ I’m like, ‘Mom, you’re halfway up the steps, you have to either go up or down.’ She’s like, ‘nope, I’m not moving.’ It took three and a half hours before I found someone who could come and help me get her into the house. I felt so helpless, like I was letting her down because she was cold, and I couldn’t do anything to fix it except call people and call people until I found somebody.

In many cases, participants who described personal deficiencies also emphasized the ways in which they were able to garner formal or family help to address their deficiencies, emphasizing cohesion within family caregiving networks (e.g. participant 1 describes end of life care for theirfather: ‘[this] stuff was like nothing I had ever done before… so my sister was great, she would leave specific […] instructions’).

Loss of ‘pre-caregiving’ life

Participants who described a loss of ‘pre-caregiving’ life depicted their day-to-day lives as shifting to involve ‘full-time nursing’ or ‘housekeeping services’ for their parent in addition to career, family, and personal responsibilities. For example, one participant stated:

It was the winter and I couldn’t leave her alone. I used to go to mass and I stopped leaving her alone. It’s like when you leave a child alone and you have this great responsibility. What about if she wakes up or she gets up or somebody knocks on the door? Forget it. I was locked up.

Participants lamented the loss of time to focus on their children, hobbies, friends, spiritual communities, or themselves because their parent required constant supervision. These narratives were sometimes shared by participants who felt they had to quickly jump into caregiving roles after a parent’s sudden health change. In some cases, participants described ways that they incorporated their caregiving roles and parents’ needs into their lives, so that personal goals or needs could be attained alongside provision of care. In these cases, caregivers used these low point memories to emphasize their competency in juggling the care role and other goals simultaneously, as one participant describes travelling with their mom to another country to visit family:

It was very difficult. It was a very difficult trip, but I had no regrets, and I’m glad I did it. […] There was a meltdown in a store, and you just had to deal with it, and we got through it, and I’m really happy I did it, but was it a fun, easy trip? No, but we did it, and so that was one thing—it was a difficult time, traveling internationally with someone with dementia.

Systemic failures

Systemic failure themes manifested in frustrating, unfulfilling, or distressing interactions with healthcare systems. For example, participants described times when they were not provided with enough information to properly provide care, could not effectively communicate with parents’ providers, or observed poor care management in facilities. In some cases, participants felt frustrated that their parent’s needs were not being met. For example, a participant explained:

There’s one doctor that’s assigned to [my dad], he goes home and then somebody else comes in and then a neurosurgeon comes in and then an oncologist came in, and they were wanting to do more and more tests. [My dad] doesn’t understand anything that’s going on. It was so overwhelming and scary. [The doctors] would start talking to my dad and I’m like, ‘he doesn’t understand what you’re talking about.’ I kept saying, ‘Do they not have in his chart that he has dementia?’

Some participants described feeling the need to jump in and offer education to providers so that they could conduct basic services for their parent. In some cases, descriptions of systemic failures allowed participants to describe their own competencies, ‘rising to the occasion’ to fight for appropriate care for themselves or their parents. For example, a participant explains that aides from home healthcare service had mistreated their mom, and he shared proudly about how he addressed the system by, ‘effectively acting as our own attorney, knowing I could have sued the guy from five states away.’

Alienation from their parent

Some participants used low points to convey alienation from their parent, particularly when they felt their parent’s personality had changed in unpleasant ways. In some cases, parents became increasingly angry, moody, or violent as their disease progressed. In other cases, parents rejected participants’ care efforts. These narratives often captured moments when the participant no longer felt they could recognize their parent, or when they felt interactions were painful. For example, one participant described alienation in all these ways:

There were occasions where, before Mom got really bad, she would look at me and go, ‘You’re such a brat.’ If we needed her to get dressed, I would have to encourage her. ‘Let’s go get dressed,’ she would push back a little bit, and she would scowl and look at me and go, ‘You’re such a brat,’ […] For two seconds, you’re 12 and you’re hurt, and you got to get over it.

In some cases, alienation stemmed from seeing their parents in pain, afraid, or ashamed of their own dependence. For example, when participants needed to provide intimate care (e.g. bathing, dressing), they described the relationship as permanently tarnished or changed. Sometimes, this form of alienation occurred after a steep, rapid decline in a parent’s physical or cognitive health. For example, one participant described:

When the dementia started advancing, for me to give her a bath, she fought me. She was still so emotionally hurt that she needed [me] to do it, to get her out of the bed and then roll her to the bathroom and get her into the shower. That was hard.

High and low point narrative structure

Our second research question was: what narrative structures scaffold these former caregivers’ narratives? We found that, across high and low point narratives, participants structured their narratives with narrative elaborations, which involved adding details or shifting the narrative’s structure in a way that would not be considered necessary to capture a factual account of the lived experience. Although every participant was prompted in the same way to share high and low point narratives, participants used different narrative elaborations to take control of the narrative and portray the depth of emotion or meaning held by the narrative for the narrator. Three types of narrative elaboration were generated through thematic analysis: comparisons, connections to earlier life, and shifting the focal point.

Comparisons

Participants compared their caregiving experiences to hypothetical experiences, to anecdotal experiences of others caring for parents, or to other caregiving situations they had previously been involved in. In doing so, participants constructed narratives that emphasized aspects of their own caregiving that were easier, harder, or more complex than what might be expected given the other examples being used as comparisons. For example, one participant compared their care for their father to that of their mother and in-laws:

The funny thing is all four, both my parents and both my wife’s parents, all have been affected differently by [dementia]. With my dad being by far the most pleasant, easy-going. In that whole time I never remember hearing him really complain, yell. He was grateful for everything.

In this example, the participant crafted this narrative to include this comparison to convey and appreciate how this caregiving experience was not only positive, but indeed much more positive than other care experiences of his recent past. Caregivers also compared to other, hypothetical caregiving scenarios, impressions that they had of what caregiving might look like for those who’s parents’ behaviors were different or more difficult to handle. For example, one participant shared:

My mom was very easy to take care of. She’s quiet. She’s not arguing. She’s not the one that would hit people. She’s not the one that would punch and scream or open the door and run out.

Connections to earlier life

When participants made connections to earlier life, they appeared to do so to communicate the gravity or importance of certain high or low point narratives. Connecting experiences from caregiving to earlier life likely allowed participants to build a more unified story of their self as a caregiver. For example, a participant described:

My dad was a big reader. He had macular degeneration; he hadn’t been reading for a decade… he would ask me to spell a word so he could pronounce it. It was like what he did for me when I was five. It definitely stirred something in me and maybe stirred something in him, which is what I was always tryin’ to do: hit a nerve where the muscle memory would kick in.

Sometimes, participants made these connections to show how their relations to their parents used to be strained, but were strengthened during caregiving (e.g. conveying the high point theme strengthened relationship with the parent). In contrast, some participants made connections to earlier life to illuminate how their parent’s cognitive impairment created distance or emphasized weight of the caregiving role (e.g. conveying the low point theme alienation from parent), thereby obscuring their connection to their parent. For example, one participant lamented:

The hard thing was to look at my father and be like, ‘Dad, what should I do?’’Cause as a daughter, my father would always tell me what to do. And now he’s relying on me to make the right decisions, and I’m kinda on my own on this.

Shifting the focal point

Finally, some narrative elaborations involved shifting the focal point of the narrative. This occurred most when the participant was prompted to tell a high point narrative, but quickly shifted the narrative towards what might be considered to a listener to be a low point, or vice versa. Shifting the focal point characterized the participant’s efforts to control the overall tone of narrative sharing to emphasize the positive or negative elements of caregiving. This often occurred for participants who felt they experienced highly positive or negative caregiving overall and wanted to convey their experience as such. For instance, when one participant was prompted to share a high point narrative, they began sharing the high point, but quickly shifted the focal point to emotionally negative aspects of the event:

[My high point was] making something for her to eat, and she actually ate it. I tried to make things that she liked, but sometimes she’d push it away. I’m like, ‘Oh, you used to love that.’ It was hit or miss. The whole time that she had the dementia, she didn’t know I was her daughter. The last few years, even when I moved her in, she had no idea who I was. I asked her all the time, and she thought I was some sort of relative. It’s almost like she wasn’t really my mother.

In other cases, participants appeared to take opportunities to shift the focal point when describing the high or low points did not align with how they wanted to remember their parent. For example, in responding to a low point narrative prompt, a participant shared about the difficulty they faced providing care for their mom, but shifted the focus of the conversation by centering her redeeming characteristics:

…It was incredibly frustrating trying to say, ‘no mom, that’s the door to the bathroom, not the door to the stairs,’ every time she came up. It was, ‘no mom, hang a left, not a right, unless you need to go to the bathroom.’ Then when she said that she couldn’t take it anymore, wanted to move out, that was frustrating. Other than that, [she’s the] woman that raised five kids after our father died….

They further described their mother’s resilience across her many years as a single mother, such that the narrative sharing focused on her important role in their family and minimized her struggles with her dementia.

Discussion

The current study illustrates how experiences caregiving for a parent living with dementia are captured retrospectively by former caregivers through salient high and low point narratives. Though caregivers often endorse a variety of positive and negative aspects of caregiving, examining high and low point narratives reveals how caregiving life chapters can be defined, in part, by specific episodes. Themes in both high and low point narratives primarily encompassed major relational issues (i.e. repairing and strengthening the relationship, alienation from their parent), how caregiving shaped the caregiver’s self-efficacy (i.e. fulfillment derived from care, fostering joy and dignity, personal deficiencies), and aspects of the caregiving experience that made caregiving easier or more difficult to handle (i.e. lighthearted moments, family conflict and lack of support, loss of ‘pre-caregiving’ life, systemic failures). Narrative elaborations underscored core themes and highlighted implications for caregiver mental health.

High and low point narratives from caregiving for a PLWD

Themes conveyed in high point narratives were consistent with several PAC that have been previously delineated, such as a sense of reward or personal growth through caregiving (Lloyd et al., 2016; Yu et al., 2018). However, some established positive aspects (e.g. purpose in life, increased family cohesion) were less clearly conveyed in the current study’s high point narratives (for reviews, see Lloyd et al., 2016 and Yu et al., 2018). We speculate that this could be for a few reasons; primarily, our research question prompted participants to narrate high points by drawing on times when ‘certain tasks, supportive acts, or responsibilities were easier than others for you, satisfying to you, or rewarding in some way’. This prompt was meant to elicit specific, episodic memories, and, when focusing on high points from caregiving, sense of purpose in life or increased family cohesion may be better elicited through prompts which encourage reflection on the broader caregiving life chapter. We also consider that purpose in life and increased family cohesion may indeed fall within the wide array of PAC, but may be better captured in low point narratives, as these are considered internal (i.e. purpose in life) and external (i.e. family cohesion) resources that can alleviate difficulties from navigating life challenges (Benzies & Mychasiuk, 2009; Sharma & Bluck, 2022).

Challenges described in low point narratives mainly reflect negative aspects of caregiving that have been established in the literature (e.g. role strain, PLWD’s loss of identity; Branger et al., 2016). However, low points in some cases also captured positive (e.g. personal growth, family cohesion) aspects of caregiving. These PAC were often woven into the narrative, as opposed to being the central narrative theme. For example, one participant, whose narrative was about systemic failures, focused on their frustration in working with the healthcare system, but included description of their own problem-solving capabilities and justice for their parent. Narratives, as subjective versions of one’s past, convey core themes (i.e. the gist of what the narrator recalls), but can also covey additional details (i.e. PAC) that may reflect constructive integration of caregiving experiences into their self-concept. Examining high and low points together allowed us to generate the hypothesis that both types of narratives can supply important context for adult-child caregivers of PLWD who are refining their caregiving life story chapters.

Caregiving narratives supporting mental health: valence, content, and structure

Lloyd et al. (2016) assert that caregivers who are led to seek out and emphasize PAC are likely to experience better mental health in the present. Further, Yang et al. (2019) suggested that one way to classify caregivers who need support is to identify those who cannot describe caregiving in a positive way retrospectively. Together, these studies suggest that interventions should support caregivers of PLWD to generate PAC to promote their mental health. In the current study, when prompted, all former caregivers could readily identify at least one high point narrative, and these involved previously established PAC. We posit that the act of prompting caregivers to recall high point narratives may not, by itself, reliably indicate those in most need of support or foster mental health outcomes, particularly after caregiving.

Instead, the ways that high and low point narratives are shared by the caregiver over time may be a more robust predictor of the caregiver’s mental health. Future research should thus differentiate between narratives that technically have positive elements, versus narratives that are positive due to their deeper meaning (Supiano et al., 2022) on mental health outcomes for former caregivers. We posit that caregivers who may be most in need of mental health support are those who have not integrated high or low points into their larger sense of their caregiving experiences, or who have integrated them in ways that reinforce negative self-views. Future research using quantitative approaches (e.g. narrative analysis of valence, content, and structure of specific narratives) can substantiate these hypotheses. Our results suggest that narrative elaborations may be one narrative tool used by caregivers to structure narratives and support positive or negative integration, indicating a promising next step for narrative and quantitative analysis.

Narrative elaborations: exploring possible indication of caregiver mental health

Narrative elaborations were points in the narrative in which former caregivers added detail that would not be considered necessary to recall the factual event they were discussing, but which helped tell a story that showcases the narrator’s deeper evaluation of the event. Narrative elaborations in narratives are more than superfluous asides; rather, they are a communicative style in which the narrator selectively attends to certain details or draws connections to other lived experiences (Bluck et al., 2016; Weeks & Pasupathi, 2011). The narrator uses narrative elaborations to makes sense of specific events by shaping a fuller interpretation of the psychological experience (McLean et al., 2020). Narrative elaborations can underpin productive integration of experiences into life story chapters, promoting adaptive mental health outcomes (Vanaken et al., 2021). However, when narrative elaborations emphasize incompetency or shift narration towards rumination, the narrator may experience psychological harm. Given the frequency with which former caregivers in this study engaged in narrative elaboration, we speculate that this structural element may dictate integration of caregiving experiences into broader caregiving chapters, guiding mental health outcomes over time. While the current study did not measure links between narrative elaborations and mental health, such measurement may be a fruitful future research direction.

Below we consider how each type of narrative elaboration identified in the current study may promote or reduce positive mental health outcomes for former caregivers. We ground this discussion in existing literature and by revisiting narratives elaborations shared by participants in this study. While speculative, these ideas may be used to shape future research by guiding examination of narrative elaborations and selection of complementary, quantitative variables. They may also guide refinements to protocols used by practitioners working with former caregivers. Specifically, for those caregivers who struggle with negative mental health outcomes, narrative therapy is considered a useful psychotherapeutic tool (Matta, 2021; Mroz et al., 2023). Narrative therapists support contextualized, individual meaning-making processes in which people can construct meaning through re-shaping narratives of their life experiences. As narrative therapy is just beginning to inform mental health care for former caregivers of PLWD, our study’s findings can support testing of refinements to effective narrative therapeutic treatment.

Comparisons

In the current study, caregivers who utilized comparisons added information to contrast their experiences with other caregiving situations or individuals. Researchers suggest that meaning-making occurs within the comparison process, describing that, ‘No experience has meaning independent of other experiences’ (Combs & Freedman, 2012, p. 1041). For instance, when some caregivers compared specific experience to more difficult times, it allowed them to frame their caregiving experience as overarchingly positive. In other cases, comparison clearly allowed caregivers to integrate expectations about caregiving (e.g. knowledge of potential challenges addressing PLWDs’ difficult behaviors) with their caregiving realities (e.g. less extreme or difficult behaviors). Although comparison can help the caregiver meaningfully integrate their caregiving experience with their larger self-narrative (Ayres, 2000), comparison to other individuals or other experiences perceived as ‘more desirable,’ ‘superior,’ or ‘normal,’ may be maladaptive (Gerber et al., 2018). Interventionists should thus be aware of the use of comparisons during narrative sharing to ensure clients are utilizing this narrative elaboration to draw conclusions that emphasize competency or acceptance.

Connections to earlier life

When caregivers made connections to earlier life, they related their caregiving experiences to earlier life experiences, such as defining experiences with their parent that may have been fun or exciting. For instance, when caregivers reflected on taking their parent to do things they enjoyed when they were young, they were able to frame that caregiving ‘task’ as overarchingly meaningful. Indeed, making connections to earlier life when reflecting on caregiving is considered an opportunity to rectify previously strained relationships and is associated with positive grief outcomes (Supiano et al., 2022). However, over-use of connections to earlier life may indicate that a caregiver is ruminating on difficult earlier family experiences as opposed to processing current experiences, which can be maladaptive (Szabo et al., 2020). Thus, practitioners can use clinical judgment to ensure that caregivers are not making excessive negative connections to their earlier life, and if they are, assist the caregiver to develop a new, more adaptive storyline.

Shifting the focal point

Narrative elaborations in which caregivers shift the focal point may allow the caregiver to take control of the narrative, particularly when prompts that challenge their already-established narrative (e.g. that caregiving was mostly good or bad) can feel like a threat (Bury, 1982). For instance, when prompted for a high point memory, some caregivers may consistently shift the focus to low points they experienced. Clinically speaking, we propose that caregivers in need of support may be those who are quick to shift the focal points of narratives to negative emotions or experiences, indicating that they have integrated an overarching negative impression of the caregiving experience or their self as caregiver. As such, interventions should not merely help caregivers locate PAC, (i.e. ‘You mentioned all these negatives, but what is positive?’) but instead help them understand how PAC can even be found within low points, so that caregivers can take ownership of a constructive, nuanced narrative.

Limitations and future directions

While participants were caregivers both before and during the COVID-19 pandemic, and this uniquely affected caregiving experiences (Ali et al., 2023), this study did not account for differences in narration across pandemic and non-pandemic caregiving experiences. Participants were also provided with the interview guide prior to the interview to encourage sharing of specific narratives. In some cases, caregivers could have spent more time planning narratives to share than others, influencing the narrative themes we identified. Further, the sample comprised only adult child caregivers of PLWD whose parent had died recently, up to three years prior to the study interview. Given the evolving nature of narratives, future research should consider how narratives may be affected by other contextual features, including historical context such as the COVID-19 pandemic. Longitudinal examination of changes in challenging narratives reveals crucial insights regarding mental health outcomes (Booker et al., 2020) but has seldom been used to characterize caregivers’ narratives, and thus is an important future research direction. Finally, the study team did not sample specific subgroups of racially or ethnically diverse caregivers. Researchers should corroborate narrative construction processes across larger sociodemographic groups (i.e. middle aged versus young adult caregivers, as well as amongst different racial and ethnic groups) to support person-centered adaptations of mental health interventions.

Conclusion

This study is the first to our knowledge that explores the content of former caregivers’ narratives, and their structures, through prompting both high and low point narratives. Core themes, secondary themes of positive and negative aspects of caregiving, and narrative elaborations embedded in these narratives are all likely to guide caregivers’ integration of their care experiences and influence their mental health as they transition out of their caregiving role. Understanding of core themes and narrative elaborations can augment development of interventions to improve psychological health of former caregivers. Future research should examine how caregiving narratives evolve over longer periods of time to build upon narrative-based interventions that prepare former caregivers for future care roles.