Personal Health Planning in Adult-Child Former Caregivers of Parents Living With Dementia

Abstract

Purpose:

To examine how former caregivers for parents living with dementia engage in personal health planning.

Design:

An inductive, qualitative study.

Setting:

Virtual, audio-recorded, semi-structured interviews.

Participants:

Thirty-two midlife former primary caregivers for parents who died following advanced dementia 3 months to 3 years prior.

Method:

Participants responded to a series of open-ended interview prompts. Interview recordings were transcribed and evaluated by a trained, diverse team to generate Consensual Qualitative Research (CQR) domains and categories.

Results:

Caregivers developed health planning outlooks (ie, mindsets regarding willingness and ability to engage in personal health planning) that guided health planning activities (ie, engaging in a healthy lifestyle, initiating cognitive/genetic testing, maintaining independence and aging in place, ensuring financial and legal security). An agentic outlook involved feeling capable of engaging in health planning activities and arose when caregivers witnessed the impact and feasibility of their parents’ health planning. Anxiety-inducing and present-focused outlooks arose when caregivers faced barriers (eg, low self-efficacy, lack of social support, perception that parent’s health planning did not enhance quality of life) and concluded that personal health planning would not be valuable or feasible.

Conclusion:

Caregiving for a parent living with dementia (PLWD) shapes former caregivers’ personal health planning. Interventions should support former caregivers who have developed low self-efficacy or pessimistic views on healthy aging to support them in addressing health planning activities.

Purpose

Family caregiving shapes a caregiver’s own health.¹ Because caregiving can be highly taxing, researchers have documented how caregiving activities can lead to negative health consequences^2,3 that can persist even after caregiving has ended.^4,5 Negative health effects are evident across caregivers of different patient populations, including in the large and growing population of caregivers of persons living with dementia (PLWD).^6–9 More recent perspectives, however, consider whether and how caregiving can positively influence caregivers’ health.¹⁰ For example, caregivers of PLWD describe developing self-care competencies during their caregiving experiences.^11,12 Insights related to self-care may expand beyond the caregiving experience, and former caregivers may additionally develop or refine personal health behaviors based on their caregiving experiences. This phenomenon may be particularly pronounced in midlife caregivers, who often take on caregiving roles for older adult parents while experiencing growing impetus to address their own health changes.^13,14 Moreover, individuals’ health beliefs and behaviors have been shown to influence those of their adult children,^15,16 but these associations have not been explored in specific disease context, such as parents’ development of Alzheimer’s disease or related dementias. In the current study, we examine how lived experiences from caregiving for a PLWD can influence health beliefs and health-related behaviors (herein represented by the term personal health planning).¹⁷

Engaging in personal health planning can benefit adults and care systems by mitigating or delaying health problems and preparing individuals to adjust to health changes when they arise.¹⁸ Personal health planning involves a range of behaviors to maximize current health and delay onset of health problems considered inherent to aging (eg, regular physical and mental activity, routine disease screening).¹⁹ These behaviors are often driven by the anticipation of health changes common in later life,²⁰ and may become important to individuals after they have witnessed health changes and declines experienced by close others.²¹ In the context of caregiving for a PLWD, existing research primarily focuses on how witnessing a PLWD’s health changes can spur anticipation of one’s own cognitive changes. For example, an increasing prevalence of Alzheimer’s disease and related dementias has been shown to spur adults’ heightened attention to dementia-related health changes in their cognition or functioning.^22,23 Caring for a PLWD has been associated with increased concerns about the likelihood of one’s own development of cognitive problems^24,25 and, consequently, cognitive symptom monitoring.^26,27 Few studies have examined other ways that caregiving for a PLWD can influence former caregivers’ personal health planning.

While cognitive changes are often portrayed as a hallmark of Alzheimer’s disease and related dementias, caregiving in this context may also expose caregivers of PLWD to a range of health-related changes, health-promoting strategies, and signs of health decline as the care recipient’s dementia progresses or the care recipient develops other chronic conditions.²⁸ We posit that caregivers are likely to make observations in their caregiving roles that shape a range of aspects of personal health planning. As such, in this qualitative study, we explored personal health planning in midlife former caregivers of PLWD, examining ways that lived experiences from caregiving influence personal health planning. To map out the diverse ways caregiving experiences may shape personal health planning, we took an inductive approach in our study design, allowing the data to guide generation of themes first, before considering how findings overlap with existing health behavior theory.²⁹

Design

This study was conducted as part of a larger project examining psycho-behavioral impacts of caregiving experiences for a parent who died following advanced Alzheimer’s disease or related dementias conducted virtually with former caregivers.¹² Method and result description followed the COnsolidated criteria for REporting Qualitative research (COREQ)³⁰ and manuscript development was guided by the ICMJE Recommendations for the Conducting, Reporting, Editing, and Publications of Scholarly Work in Medical Journals. Data collection, data analysis, and write-up of the study findings were completed using the Consensual Qualitative Research (CQR) method.³¹ This study was approved by the lead author’s Institutional Review Board.

Setting

This study was conducted virtually, with interview sessions conducted over videoconferencing platforms or by phone. Participants were asked to complete their interview session in a private location, and often engaged in their session in their homes. The interviewer conducted interviews from a private office.

Participants

As caregivers who identify as men are underrepresented in research, we purposively sampled for a relatively equal distribution of man- and woman-identifying participants. We recruited participants through national caregiving support networks (eg, CareManity, Caregiver Action Network, Alzheimer’s Association), research recruitment services (eg, ResearchMatch, a national online database linking volunteers with studies, supported by the National Institute of Health), and social media (eg, Reddit) between October 2021 and February 2022. Individuals who saw information about our study filled out an initial screening survey to determine eligibility through a Qualtrics survey link or over the phone. In all cases, eligible participants were contacted to be scheduled for a study session.

Eligibility criteria included that participants were U.S. citizens (due to internal parameters for compensating participants) ages 40–65 years (representative of midlife) who had acted as a primary family caregiver for a parent with advanced Alzheimer’s disease or dementia who died between 3 months and 3 years prior. Pre-determined exclusion criteria were: that the participant did not meet the above criteria, did not identify as a primary caregiver for their parent, or did not participate in activities to support their parent’s daily living. Some individuals completed the screening information, were deemed eligible, and were assigned an identification number but did not participate due to: 1) personal time constraints (n = 5), halt on inclusion of female participants (n = 4), and for undisclosed reasons (n = 9). Participants were compensated with $25 gift cards.

Method

Data Collection

All participants were provided with the interview guide prior to the study session. This allowed participants to review questions and prepare responses in advance and aided in the natural flow of conversation during the interview. On average, study sessions lasted 92 minutes (SD = 25.30). All audio recordings were transcribed using a professional transcription service and checked by the first author. Transcriptions were managed using NVivo software.

Analysis Strategies

Research Team.

CQR analysis requires a large and diverse team of coders,³¹ and one or more auditor(s). The coders engage with the data independently and in a group setting to consensually build final domains and categories that serve as the qualitative study findings. The auditor(s) who work with the data independent of the coding team and engage with the team at regular checkpoints to offer contrasting ideas, address any potential confirmation bias of the coding team, and improve data trustworthiness.³¹ Our research team included five members conducting qualitative analysis, two auditors, and two senior researchers who guided study design. The coders and auditors provided positionality statements at the beginning of the coding process and participated in reflexivity activities to acknowledge and reduce obstructive biases.³² See Supplemental File 1 for abridged positionality statements. We further maintained rigor using CQR-specific techniques, as described below, and other qualitative techniques, including the use of multiple participant quotes in codebooks³³ and saving memos in transcripts to support development of domains and categories.

Analysis Process.

After data collection was complete, the coding team engaged in training and met weekly to perform CQR analysis. The study team agreed that the sample achieved during recruitment provided sufficiently detailed responses to interview prompts before the study team ended recruitment and began analysis. We provide a short, comprehensive summary of our analysis process here, and invite interested readers to learn more by reviewing the substantial and growing literature on CQR.^34,35 CQR first involves analysis of whole transcripts to develop domains and subdomains (ie, broad subject areas) across transcripts. Coders created new domains or revised existing domains until consensus was reached. Once the list of domains was established, defined, and audited, all transcripts were reviewed again and parsed into these domains. The result was that each transcripts’ content was captured within meaningful domains. Coders then created a concise list of core ideas (ie, short, clear summaries of participants’ statements) related to each domain in each transcript, to be used for cross analysis. During cross analysis, all core ideas related to a given domain across transcripts were combined into one document and reviewed together for common themes. These themes were sorted meaningfully into categories (ie, specific subject areas representing thematic patterns) that nested inside domains/subdomains and were again reviewed by the auditors. Although this process yields multiple domains, only the subdomains relevant to the current study are discussed in this paper’s results section.

Results

This study included 32 midlife former caregivers of PLWD. Participants were interviewed remotely from 19 US states and territories. Our focus on a relatively equally gender-balanced sample yielded 17 women, 14 men, and one non-binary participant. The majority of the sample reported that, in general, their current health was good, very good, or excellent(84.4%) and was similar to the year prior (65.6%). See Table 1 for sample characteristics.

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 (2-year college)	5 (15.60)
BA/BS (4-year college)	11 (34.40)
Master’s degree or equivalent	7 (21.90)
Doctorate degree or equivalent	3 (9.40)
Participant Annual household income (USD)
30–49,000	6 (18.80)
50–69,000	5 (15.60)
70–89,000	10 (31.30)
90–109,000	7 (21.90)
110 000 and above	4 (12.50)
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)
Participant health
Excellent	4 (12.50)
Very good	15 (46.90)
Good	8 (25.00)
Fair	3 (9.40)
Poor	2 (6.30)
Participant health compared to one year ago
Much better	0 (0)
Somewhat better	6 (18.80)
About the same	21 (65.60)
Somewhat Worse	5 (15.60)
Much Worse	0 (0)

Our analysis generated two subdomains of personal health planning: (1) health planning outlooks, or mindsets for considering one’s own health and possible health changes, and (2) health planning activities, or types of priority behaviors for addressing one’s own health and possible health changes. Smaller categories were embedded within these subdomains and revealed typologies of health planning outlooks and types of health planning activities. Table 2 presents participant quotes related to health planning outlook and activities categories.

Table 2.

Personal Health Planning Domains, Categories, and Illustrative Quotations.

Health planning activity subdomain	Health planning outlooks subdomain
	Agentic	Anxiety-expressing	Present-focused
Engaging in a healthy lifestyle	[My parents] also were not very social, and I know being social can help contribute to maintaining your acuity. I try to be social. I talk to a few of my friends on the phone once a week. I work. I see people now about three times a week. I do try to maintain a social existence because I think that that’s what my parents did not do. Participant 11	I definitely have concerns. There’s a likelihood that I’m gonna [have dementia]. I’m 58. I forget little things. You just start thinking about, is this a precursor? Senility? It’s terrifying. I don’t know what to do about it. I pray like hell that they come up with a miracle pill. Participant 16	My dad is one of four kids. All of them had some form of dementia. I feel like, because of that, I’m like, “Oh, well, pretty strong chance that something might happen in all of his siblings.” It’s like, “I can’t worry about that right now.” Participant 6
Initiating cognitive or genetic testing	I even went and had an appointment with the neurologist that I used to take my mom and my dad to because we developed a very nice relationship. We went through all the tests, and I scored 100. He says, “I think you’re all right.” Participant 24	[First my] dad, and then finding out that my grandmother had it. I’ve had tons of concussions so I already have some memory issues. I’m scared to death and I have been wanting to go to a memory clinic, but… I’m holding off on that. I now understand how my mom had the fear. Participant 49	I’m avoiding getting the genetic testing done. I don’t want to know, and I don’t trust the healthcare industry not to use it against me. I don’t have long-term care insurance. I don’t plan on buying it, but what if I do want to? If I’ve had the genetic testing, I think they can use that against you. Participant 17
Maintaining independence and aging in place	Yeah, I won’t ever live in a two-story house again. I saw how for [my mom] having stairs became a barrier. So I don’t see the need to live in a place where stairs are going to be a part of things. So we just made the decision to sell this house. And I am buying a patio home, which is all one floor. Participant 12	I’m just tryin’ to be as independent as long as I can. I do think about it, and I’m a little worried about it because I’m alone. I don’t have children. Yeah, it concerns me. It really does. I do need to take more of an active role… I do know that anything could creep in and change that, and I do need to be prepared for it. Participant 7	This is a place I’ve lived in for 20 years. Yeah, I’d want to stay home. But, I dunno, if I had friends around, are friends gonna visit me if I’m home and sick? If it’s dementia, I don’t want to put someone through that. Put me in a good place, I guess? I don’t know how you just decide. Participant 20
Ensuring financial and legal security	It was just a blessing that we had long-term care [insurance] for my parents, that my brother put him on. Number one is, my husband and I have long-term care [insurance] for ourselves. Participant 26	Guess what? My dad had a will, and even with Alzheimer’s, somebody went and rewrote his will. You can do that stuff and get away with it. It makes me anxious. It makes me a little scared. Makes me almost wanna join a religious cult ‘cause they take care of each other. Participant 9	My father didn’t have that much, but, when I realized he was startin’ to slip, I went with him to the bank, and I had him put me on all the accounts. I’m in no rush to do that with my kids. My daughter is a very, very, very difficult person. For my wellbeing and my wife’s wellbeing, I wouldn’t want her taking care of me or her. Participant 8

Health Planning Outlooks

Overall, having provided care for a PLWD fostered a somewhat negative, but realistic, view of the aging process (eg, as Participant 22 explained, “Getting old is terrible, but consider the alternative.”). Participants described that providing care for their parent caused them to be more attuned to the variety of health changes they may expect in the future and the many avenues available for addressing health changes. In general, this exposure cultivated uncertainty about future health. Our analyses defined 3 categories of health planning outlooks that describe distinct approaches participants took to addressing their health uncertainty: an agentic outlook, an anxiety-expressing outlook, and a present-focused outlook.

Some participants described an agentic outlook, which involved feeling capable of and motivated to engage in specific actions, goals, or habits to address health concerns, maintain health, or mitigate consequences of future health declines. In many cases, caregivers reflected on what their PLWDs did well or poorly to mitigate the impacts of their illness, describing feeling capable of either engaging in similar, positive behaviors or avoiding similar, negative behaviors. Participants often described recognizing the importance of health-promoting activities at midlife to minimize difficulties caring for oneself in late life, and felt uniquely positioned to address their health in their current life phase: for example, Participant 49 explained, “this isn’t just about dementia care, this is about taking care of yourself… I think it’s even more important now, not when you’re 60 or 70 years old.” In other cases, participants’ motivation to address their health was driven by an interest in minimizing future burdens on their siblings, children, and other family, having recently lived through the caregiving role themselves.

The second type of health planning outlook was an anxiety-expressing outlook. Participants described that they thought often about the uncertainty surrounding their health trajectories and possible future health issues, but that they did not feel capable of taking actions that would address these uncertainties. For these participants, reflection on possible health changes without a sense of agency to address health needs appeared to spur anxiety or obsession. Specifically, participants with this anxiety-expressing outlook often emphasized the importance of being prepared for eventual illness or disability but admitted to doing little to prepare through health-promoting actions, because actions felt overwhelming, or participants believed they had limited resources to engage in planning. Instead, participants often hoped for extraordinary solutions to arise to address any future health needs. Self-described limitations to internal or external resources included preexisting anxious tendencies, fear of dependence on others, and indecision, which often drove anxiety-expressing outlooks. In some cases, participants described effortfully shifting their mindsets from anxiety-expressing to agentic, recognizing that an anxiety-expressing outlook likely has negative consequences (eg, Participant 14 shared, “Then I realize well, sometimes I put too much stress on myself. Sometimes I overthink things… it actually had me thinking more about planning and making sure that ‘okay, what signs should I look for?’”).

The final category was a present-focused outlook, described by participants who addressed their aging uncertainty by distancing themselves from future health concerns, embracing beliefs that their chances of illness or disability were minimal, or accepting the inevitability of disease passively. These participants also often described low agency or capability to address health needs across time, but in this case, creating psychological distance minimized anxiety or obsession. For example, Participant 32 described, “I got to a point where, most the time, I don’t worry about any of this stuff. I realized that worry uses a lot of energy, and it doesn’t accomplish anything worthwhile.” In many cases, this present-focused outlook appeared to be a form of coping for participants who witnessed their PLWD’s suffering or care mismanagement and were pessimistic about their ability to control their own health trajectory. In other cases, a present-focused outlook manifested for participants who lacked external resources such as financial means or social support to address possible health changes in the ways that their parents had. In these cases, participants appeared to be comforted by a ‘present-thinking’ approach to their health. In contrast to the previous category, lack of internal resources (eg, self-efficacy) was not described as leading to this type of outlook, and hope for extraordinary solutions was not expressed.

Health Planning Activities

Participants described a variety of health planning activities, priorities or points of focus for personal health planning in the present and near future that were tied to their caregiving experiences. Health planning activities sometimes were motivated by concerns about dementia, though many activities related to maintenance of health in other ways or anticipation of other illnesses or disabilities. Most participants focused on just one or two health planning activities and often chose activities that seemed important to the health or quality of life of their parent. The way participants described engaging in activities, or inactivity, was related to their health planning outlooks, such that specific behaviors appeared to depend on participants’ outlooks, as described below.

The first category included activities related to engaging in a healthy lifestyle. Participants described a variety of activities that they believed could support their healthy lifestyle, including physical fitness and movement, weight loss-specific diets and eating habits, activities to maintain cognitive acuity, avoiding drugs or ‘unhealthy’ substances, promoting their mental health, and regular socialization. Participants often described these activities in relation to preventing dementia. Participants with agentic outlooks described engaging in one or more specific activities, while those with anxiety-expressing or present-focused outlooks described inability or disinterest in engaging in these activities.

The second category, initiating cognitive or genetic testing, involved learning more about risk of cognitive impairment or other diseases (eg, cancer), either through assessing current cognitive acuity or screening for genetic markers of disease. Those with agentic outlooks engaged in these forms of testing and described unexpected additional benefits of testing, including developing a long-term relationship with a neurologist and empathizing with what their PLWDs went through when they were diagnosed. Those with anxiety-expressing outlooks thought often about testing but were reluctant to engage in testing. Those with present-focused outlooks developed rationales for avoiding testing, despite recognizing the importance of testing.

Maintaining independence and aging in place encompassed interest in avoiding reliance on family members, health care professionals, or care communities across late life. For those with agentic outlooks, this often involved planning in advance for housing that would allow for aging in place (eg, moving to a more age-friendly home or community, modifying the current home to be age friendly). Those with anxiety-expressing outlooks worried about their independence but did not engage in specific activities that would improve likelihood of maintaining independence; they expressed hope that their lifestyle wouldn’t need to change. Those with present-focused outlooks were ambivalent about making housing decisions before health changes arose.

The final category, ensuring financial and legal security, involved ambitions to guarantee assets were secure and sufficient to address needs across late-life (ie, coverage for long-term care communities) or protected to be passed down to approved next-of-kin. Those with agentic outlooks sought out and obtained resources to ensure financial coverage, security, and independence. Those with anxiety-expressing outlooks were concerned about the future of their finances and assets but had no strategies to address their concerns. Those with present-focused outlooks avoided engaging with financial and legal safeguards.

Conclusion

This study illustrates ways in which caregiving for a PLWD in midlife can shape former caregivers’ own personal health planning. Transitioning out of this caregiving role can exacerbate former caregivers’ feelings of uncertainty about their own health trajectories. Whereas previous research has focused on heightened uncertainty about, and subsequent monitoring of, cognitive symptoms in former caregivers of PLWD (ie, behaviors that may primarily reinforce health-related anxiety),^25,27 the current study characterizes health planning activities that encompass a range of behaviors beyond cognitive symptom monitoring or attempts to promote cognitive acuity. This study also characterizes diverging health planning outlooks, in other words, feelings of capability and motivation to engage in specific activities to address health planning activities, that were often described as reactions to salient recollections from caregiving.

Findings expand our understanding of the potential benefits and drawback of caregiving for a PLWD in terms of defining health planning activities and developing health planning outlooks that guide activities. Instead of heightening health-related anxiety, developing an agentic outlook can be considered a benefit of caregiving³⁶ that may lead to positive health outcomes. Participants with agentic outlooks described thoughtfully engaging with or initiating health planning activities, rather than reacting to immediate health stressors, demonstrating proactivity that may be key to extended health spans across late life.³⁷ In contrast, participants with an anxiety-expressing outlook recognized the importance of health planning but described inability to mitigate their health uncertainty through health planning activities. Individuals who have genetic (ie, family) exposure to dementia, high health and dementia anxiety, and high perceived risk of developing dementia, can still sometimes resist engaging in activities to plan for future health needs.³⁸ Our results suggest one pathway by which this may occur: if exposure to dementia through caregiving provides anecdotal evidence that health planning is overwhelming or requires unattainable resources, former caregivers may not feel capable of engaging in health planning activities, and instead resort to hoping for extraordinary solutions to manifest and curtail health declines across late life.

While our qualitative analysis was not guided by a preexisting theory, results resonate substantially with uncertainty management theory, which posits that individuals address health uncertainty by evaluating the likelihood of positive outcomes from attempting to reduce uncertainty.³⁹ For example, individuals often address illness-related uncertainty with information management strategies^40–42 such as seeking information to understand illnesses, predict possible illness trajectories, and recognize signs of healthy aging.⁴³ This information-seeking approach reduces uncertainty by empowering individuals’ decision-making as their illness progresses,⁴⁴ promoting preparedness for future health changes and better coping when health challenges arise.^18,45,46 Still, individuals vary in their management of health uncertainty, and other approaches to addressing uncertainty can instead sustain or increase uncertainty, impacting wellbeing and health navigation over time.⁴⁷ If, for example, information seeking strategies are considered to reduce hope or negatively alter lifestyle, individuals will instead choose to maintain uncertainty (eg, by ignoring options, avoiding health information) or even seek ways to increase uncertainty (eg, by imagining alternative futures that expand possibilities for solutions to health problems).

To date, research framed by uncertainty management theory in dementia-care contexts has largely examined how caregivers manage uncertainty towards their care partners’ health trajectories^48,49 and caregiver support services.¹⁹ Here, we apply this theory to caregivers’ own health uncertainty, heightened in the aftermath of caregiving for a PLWD. Our three categories of health planning outlooks overlap with diverging trajectories of uncertainty management. Former caregivers with agentic outlooks described engaging in activities that increased knowledge (eg, seeking genetic testing, discussing housing options with family members), to reduce their uncertainty. Their focus on just a few chosen health planning activities may further mitigate health uncertainty by bringing clarity to the things that feel most important for addressing health over time. In contrast, those with anxiety-expressing and present-focused outlooks described concerns that deterred them from engaging in activities to mitigate their uncertainty. External circumstances or personal limitations made activities seem unattainable, and anticipated negative consequences (eg, family conflict, fear of discrimination from genetic testing) outweighed possible benefits. These outlooks may promote feelings of helplessness as health changes arise over time. Former caregivers with anxiety-expressing or present-focused outlooks may not benefit from initiatives that provide information to support personal health planning, but instead may gain more through interventions that allow them to process complex feelings towards personal health planning in the aftermath of the loss of their parent.²¹

Limitations and Future Directions

This study provided critical qualitative investigation, but this method also involved some limitations. First, because study interviews focused on caregiving experiences, health planning outlooks described in this study may not reflect outlooks undertaken in situations where caregiving experiences are perceived to be inconsequential to the caregiver. Additionally, if probed about a variety of health planning activities (eg, using a questionnaire-style self-report measure), participants may endorse different outlooks for different activities, particularly in cases where activities do not resonate with caregiving experiences. Future research should determine the extent to which former caregivers’ outlooks are stable across health activities (ie, as suggested by uncertainty management theory) vs being activity-dependent, and the extent to which caregiving experiences, vs other education or lived experiences, guide personal health planning. Relatedly, patterns of health planning outlooks and activities may vary across diverse samples of midlife former caregivers. While qualitative studies are not typically designed with the goal of being generalizable to broad populations, or to include large, heterogeneous samples,⁵⁰ we recognize the limitations of our sample for investigation of this topic, particularly in non-US caregivers. Future research should examine this topic in other countries’ caregivers, and, in doing so, researchers should consider changes to the study design that would promote cultural sensitivity. Finally, although the CQR method was designed to minimize biases (eg, through large and diverse coding teams, emphasis on coder consensus, reflexivity, auditing),³¹ we recognize that most qualitative studies are not entirely devoid of biases.⁵¹ In our study, our research team did not include a midlife former caregiver, potentially limiting interpretation of transcripts from midlife former caregiver participants.

While this study provides important context for examining personal health planning in former caregivers of PLWD, influences of participating in health activities on health outcomes cannot be determined through this study design. Future research should examine associations between outlooks generated from these findings, engagement in specific health activities, and health outcomes across late life. Relatedly, this inductive, qualitative study could not categorize caregivers in such a way that the incremental influence of multiple factors (eg, caregiving experiences, socioeconomic status including household income and education level, health literacy, social support networks) on health planning outlooks/activities could be tested statistically. Researchers should thus use the current study’s findings to propose, and deductively examine, more complex models that include independent predictor variables, consider caregiving experiences as potential mediators of the relation between predictors and personal health planning, and test associations with health outcomes in midlife. To do this, researchers should use the current study to develop scalar questionnaire-type measures of personal health planning or a deductive, qualitative coding scheme to be applied to caregiver interviews.

Conclusions

Researchers have called for increased attention to ways to promote the health of family caregivers during and following their care provision.⁵² The current study underscores the heightened health uncertainty experienced by former caregivers of PLWD as a consequence of care provision. It described how these former caregivers address this uncertainty through health planning activities that are taken up depending on disparate health planning outlooks. Many participants’ lived experiences from caregiving guided selection of productive health activities, though some felt unable to engage in, or avoided engaging in, productive activities. Efforts to promote the health of former caregivers of PLWD should focus on mitigating negative consequences of anxiety-expressing health planning outlooks and charting associations between agentic outlooks and positive health outcomes.

So What?

What is already known on this topic?

Family caregiving can impact physical and mental health among caregivers, but also promote self-care abilities. Caregiving for a person living with dementia (PLWD) can also exacerbate concerns about one’s own cognitive functioning.

What does this article add?

Caregiving for a PLWD can increase feelings of uncertainty about one’s own future health, and caregivers reference lived experiences from caregiving when they consider and engage in personal health planning to address this health uncertainty. The existing uncertainty management theory can be applied as a theoretical overlay to describe health planning outlooks in these caregivers.

What are the implications for health promotion practice or research?

Those caregivers who develop an agentic outlook following caregiving may engage in more productive health planning activities across late life. Interventions to promote personal health planning for former caregivers of PLWD should be tailored to former caregivers’ health planning outlooks. Interventions developed for former caregivers with anxiety-expressing or present-focused health planning outlooks should support these caregivers to process complex feelings towards personal health planning stemming from their care experiences.