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Original articles

The Post-caregiving Health Model

A Theoretical Framework for Understanding the Health of Former Family Caregivers of Persons with Dementia

Corey Magan, Kristin PhD; McCurry, Mary K. PhD; Sethares, Kristen A. PhD; Bourbonniere, Meg PhD; Meghani, Salimah H. PhD; Hirschman, Karen B. PhD

Author Information
doi: 10.1097/ANS.0000000000000316
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Abstract

IN 2018, 16 million Americans provided 18.5 billion hours of informal, unpaid care for a relative or friend living with Alzheimer disease or a related dementia.1 Dementia is an umbrella term “for diseases and conditions characterized by a decline in memory, language, problem-solving, and other thinking skills that affect a person's ability to perform everyday activities.”2 Family caregivers assume responsibility for the majority (83%) of all care provided to the care recipient with dementia, often for prolonged periods, resulting in physical and emotional burden.1 Subsequently, family caregivers frequently experience depressive and anxiety symptoms, sleep disturbances, increased stress, and reduced subjective well-being while providing care to a person living with dementia.3–8 Family caregivers report unique challenges associated with providing care to a person living with a dementia diagnosis. Compared with caregivers of people without dementia, caregivers of individuals with dementia are more likely to report physical, emotional, and financial challenges1,9 and experience greater burden related to care.10 Further, caregiving affects immune function and inflammation to a greater degree in dementia caregivers than caregivers of people without dementia.11

Statements of Significance

What is known or assumed to be true about this topic:

We know that chronic stress has a negative impact on health outcomes in family caregivers of persons with dementia, and that poor health outcomes can persist following the care recipient's death. We know that post-caregiving health outcomes are affected by caregiver personal characteristics (eg, personality traits), environmental characteristics (eg, social support), emotions, and the coping strategies employed by the caregiver.

What this article adds:

This article proposes a new theoretical model that describes how personal and environmental characteristics, emotion, and coping affect health outcomes in former family caregivers following the death of a care recipient with dementia. The new model can provide a framework for future nursing research related to caregiver health outcomes following the death of a care recipient with dementia.

While there is a scarcity of research on caregiver stress following the death of the care recipient, the limited existing research indicates that stress does not improve or resolve following the death of the care recipient, despite resolution of the caregiving episode. Recent qualitative data revealed that former dementia caregivers endure ongoing depressive and anxiety symptoms, difficulty regaining their pre-caregiving quality of sleep, and continuing physical health complaints for as long as a decade post-caregiving.12 Further, reduced quality of life and social isolation were commonly present post-caregiving.12 Rates of depressive symptoms (42%), anxiety symptoms (42%), and sleep disturbances (74%) among former dementia caregivers13 surpassed rates in the general adult population.14–17 Caregivers with the greatest risk for psychological distress and impaired sleep were those whose personality traits were neurotic or less extraverted and those who utilized dysfunctional coping strategies to manage stressful life events.13 Measures of the D-dimer coagulation biomarker in dementia caregivers trended upward for 6 months following the care recipient's death or placement in a nursing home.18 Systolic blood pressure remained elevated with positional changes for 18 months following nursing home placement or the death of the care recipient.19

Post-caregiving is the term used to describe the time following the end of a caregiving episode due to the death of the care recipient. Despite evidence suggesting that the negative effects of caregiver stress may extend into post-caregiving,11,12,18,19 the population of former family caregivers of persons with dementia remains underinvestigated, and further studies are necessary to better understand long-term trajectories of post-caregiving health. However, nurse researchers are challenged by the dearth of theoretical frameworks to guide research that will generate a more nuanced understanding of caregiver health during post-caregiving. The purpose of this article is to describe the development of the Post-caregiving Health Model and its potential for serving as a framework for future research related to the health of family caregivers following the death of a care recipient with dementia.

FOUNDATIONS OF THE POST-CAREGIVING HEALTH MODEL

The Post-caregiving Health Model was developed from a synthesis of research and theory. The Transactional Theory of Stress20–22 provided a theoretical foundation for the construction of the new Post-caregiving Health Model and was adapted in accordance with the available empirical and qualitative research on caregiver health following the death of a care recipient with dementia.

The Transactional Theory of Stress

Historically, stress models served as frameworks for understanding the relationship between chronic stress and the health of family caregivers who are currently caring for a person with dementia,22–24 but there is a need for theoretical models depicting post-caregiving health in former caregivers. We examined models of stress,22–24 chronic sorrow,25 and grief26 for relevance to post-caregiving health, and selected the Transactional Theory of Stress to provide a theoretical foundation for the development of the Post-caregiving Health Model. The Transactional Theory of Stress was selected for 3 reasons: (1) utilizing a stress theory as a conceptual foundation was supported by research findings, which suggests there may be long-term effects of chronic stress on health following the care recipient's death11,12,18,19; (2) the key concepts were clearly defined and supported by research related to this population; and (3) the theory is middle-range in scope, allowing for the scope to be narrowed and adapted to the unique population of former dementia caregivers in the new model.

Previously, researchers developed adaptations of the Transactional Theory of Stress to explicate the relationship between adjustment to caregiving, stress, and coping in family caregivers who are currently providing care to a person with mental illness,27 colorectal cancer,28 and multiple sclerosis.29 For example, Mackay and Pakenham27 adapted the original theory22 by incorporating situation-specific variables related to the context of caregiving into the adapted model, such as caregiver-care recipient relationship quality, length and frequency of caregiving, and care recipient diagnosis and symptomatology. Other researchers utilized the Transactional Theory of Stress to develop an integrated framework for studying adjustment to bereavement, but the resulting framework was not tailored specifically to the experiences of family caregivers.30 To our knowledge, the Transactional Theory of Stress has not been adapted previously for use in studying the unique population of former family caregivers.

Philosophical stance and assumptions

The Transactional Theory of Stress illustrates the relationships among stress, appraisal, emotion, and coping through the lenses of existentialism, humanism, pheno-menology, holism, and hermeneutics.22 This philosophical foundation underscores the im-portance of individual differences in appraisal and coping and a cognitive-motivational, process-oriented approach to understanding the stress transaction.22 Thus, the Transactional Theory of Stress was founded on 4 underlying assumptions:

  1. Personal meanings and values are central to stress and emotion;
  2. Stress and emotion are highly variable according to changes in circumstances;
  3. The whole cannot be understood by simply examining the sum of its parts; and
  4. The mind and behavior are subsystems functioning within the larger physiological, psychological, and sociocultural systems.22

Key concepts and processes

The Transactional Theory of Stress represents a unity between the 4 key concepts: stress, appraisal, emotion, and coping (Figure 1).

Figure 1
Figure 1:
The original Transactional Theory of Stress: antecedents, processes, and outcomes.22

Stress

Stress is defined as a transaction between a person and the environment that is appraised by the person as surpassing their personal resources and jeopardizing their well-being.22,31 Stress is a consequence of (a) “the psychological meaning a person constructs about an environmental event”22(p55) and (b) the emotions produced by the personal meaning of this event. Stress is influenced by individual differences in response to stimuli, such as differences related to unique personality traits and personal resources that promote or impede coping. Therefore, stress reactions are highly variable from person to person.

Stress is categorized into 3 distinct types: harm/loss, threat, and challenge. A harm or loss implies that a damage or loss has occurred. A threat is a potential harm or loss that a person believes will likely occur in the future and a challenge is an impediment that may be surmounted with perseverance.22,32 Whether circumstances are regarded as a harm/loss, threat, or challenge is determined by how one appraises their relationship with the environment.

Appraisal

Appraisal is the process of continually assessing and reassessing the personal significance of one's relationship with the environment.22 The antecedent conditions of appraisal that impact individuals' appraisals of the person-environment relationship are categorized as personal or environmental variables (hereafter referred to as “characteristics”). Personal characteristics are conditions intrinsic to the individual and consist of their personal goals, self-perception and perception of their surroundings, and personal resources. Personal resources are the attributes that facilitate adaptation and coping, such as socioeconomic status, intelligence, social skills, or spirituality.22 Environmental characteristics are conditions that are extrinsic to the individual, such as social demands (eg, pressures and expectations from society), social constraints (eg, work overload), opportunities (eg, job promotion), and cultural norms and values.22

The Transactional Theory of Stress highlights 2 types of appraisal: primary and secondary.22,32 Primary appraisal is the individuals' assessment of the personal significance of their transaction with the environment. If an individual discerns a danger to his or her goals or values, stress manifests as a harm/loss, threat, or challenge. When an individual recognizes a harm/loss, threat, or challenge, he or she must evaluate the available coping strategies through the process of secondary appraisal. During secondary appraisal, the individual evaluates his or her options for coping, the source of the harm/loss, threat, or challenge, and his or her intent to change. Primary and secondary appraisals can be conscious or unconscious processes.22

Emotion

Emotion is conceptualized as “a complex organized system consisting of thoughts, beliefs, motives, meanings, subjective bodily experiences, and physiological states, all of which arise from our struggles to survive and flourish by understanding the world in which we live.”22(p100) Eight stress emotions (anger, envy, jealousy, anxiety, fright, guilt, shame, and sadness) and 7 positive emotions (relief, hope, happiness, pride, love, gratitude, and compassion) exist and each emotion expresses (a) the nature of a person's appraisal of a transaction and (b) the efficacy of the coping strategy employed.22,31,32 Emotion is a “superordinate system” of interdependent components, including motivation, appraisal, coping, stress, and emotion, which should not be separated.22(p101)

Every emotion is connected to a corresponding relational meaning. A relational meaning is the personal significance people derive from their relationship with their environment. For example, the stress emotion anxiety is matched with the relational meaning described as an existential threat. The positive emotion happiness is connected to the relational meaning termed progress toward the realization of a goal.22

Coping

Coping is a process of “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person.”21(p141) Coping serves as a mediator in the stress process; therefore, stressful emotions can resolve and be replaced with positive emotions if coping is effective.32

Coping is categorized into 2 subsets—problem-focused and emotion-focused—which are interconnected and complemen-tary.22,32 A person who employs problem-focused coping will attempt to actively change the person-environment relationship, while someone enlisting emotion-focused coping will modify the personal meaning of the person-environment relationship, subsequently changing the emotion. Emotion-focused coping is most appropriate when the circumstances of stress are appraised as unmodifiable.22,32 Reappraisal is a type of emotion-focused coping that involves the formation of a revised relational meaning through subsequent appraisals of the stressful transaction. Positive reappraisal allows the transaction to be perceived in a more positive way, thereby changing the emotion, yet the circumstances are unchanged.22,32

Specific problem-focused coping strategies include accepting responsibility, active coping, seeking instrumental support, and planful problem-solving.22,32,33 Emotion-focused coping strategies encompass positive reappraisal, seeking emotional support, acceptance, humor, and religion.22,32,33 Individual coping strategies are not exclusively effective or ineffective because the consequences of coping are contingent on differences in personality traits, the nature of the harm/loss, threat, or challenge, and how the outcome is measured.22,31

Summary of processes

Stress, appraisal, emotion, and coping exist as one unit of interdependent constructs with emotion being the superordinate concept, encapsulating the other constructs. The mediating processes encompass (a) appraisals of one's environmental demands and coping options; (b) positive and stress emotions; and (c) use of problem-focused and emotion-focused coping strategies. Causal antecedents (personal and environmental characteristics) impact the processes involving appraisal, emotion, and coping. These processes may produce a stress response, which generates positive or negative outcomes related to health and well-being. A visual representation of these processes as they relate to health and illness is provided in Figure 1.

Outcomes produced by the stress process

Physical, psychological, and social health are the primary outcomes produced by the stress process. Specifically, long-term outcomes include acute and chronic illnesses, recovery from preexisting illness, psychological and social functioning, and longevity.22,31,32 A stress response may generate illness and impaired psychological and social function, while a positive response may culminate in health and well-being.22 Health outcomes can change with ongoing coping and reappraisal.22

POST-CAREGIVING HEALTH MODEL

Figure 2 provides a depiction of the Post-caregiving Health Model. In this model, post-caregiving is defined as the time following the resolution of a caregiving episode due to the death of the care recipient, as opposed to placement in a nursing facility. Researchers found that a caregiving episode typically continues following nursing home placement because family caregivers of nursing home residents continue to provide care and advocacy on a regular basis.34 Further, post-caregiving is typically characterized by 2 significant losses: the loss of the care recipient and the loss of the caregiving role.12,35

Figure 2
Figure 2:
The Post-caregiving Health Model, adapted from the Transactional Theory of Stress.22

Using the Transactional Theory of Stress as a foundation, we sustained the original concepts of stress, appraisal, emotion, and coping (Figure 1) in the new model (Figure 2), but narrowed the scope of the new model to focus on other concepts unique to dementia post-caregiving and to encompass the characteristics that are relevant to former dementia caregivers. As represented in Figure 2, the antecedents (personal and environmental characteristics), processes, and outcomes are adapted in alignment with qualitative and empirical data related to caregiver health following the death of a care recipient with dementia. Post-caregiving health is an outcome of the stress process that encompasses caregiver personal and environmental characteristics, the caregiver's appraisal of the care recipient's death and the culmination of the caregiving episode, their utilization of problem-focused or emotion-focused coping strategies, and emotions. Post-caregiving health is divided into 4 interrelated domains: psychological, physical, social, and spiritual, with the latter domain being a new addition to the model. Through reappraisal, former caregivers may reevaluate the care recipient's death and the end of caregiving, and potentially alter the relational meaning of the circumstances. A new relational meaning will change the emotion experienced by the former caregiver and can alter health outcomes over time.12,36–39 In contrast to the original model's linear depiction of the appraisal-coping-emotion processes, appraisal, coping, emotion, and reappraisal are now represented as cyclical in the new model (Figure 2) to explain the fluctuating nature of health outcomes in many former dementia caregivers and highlight caregivers' capacity to improve health over time.12

Antecedents

During post-caregiving, several antecedent personal and environmental characteristics affect former caregivers' appraisal and reappraisal of the personal significance of the care recipient's death and the resolution of the caregiving experience. These characteristics are supported by research relevant to this population and, therefore, are incorporated into the Post-caregiving Health Model. Relevant personal characteristics include the former caregiver's sociodemographic characteristics (age, gender, race and ethnicity, educational level, income, and relationship to the care recipient), personality traits, history of preloss depression, and preloss level of caregiver burden. Salient environmental characteristics include a history of the care recipient being placed in a long-term care facility, social support, and resource utilization.

Personal and environmental characteristics may change during post-caregiving, continuously influencing the appraisal-coping-emotion process and its outcomes. Therefore, personal and environmental characteristics are positioned with a directional arrow toward the processes and outcomes. Directing the causal antecedents toward the center of the model represents their continuous influence on the appraisal-coping-emotion process and outcomes.

Personal characteristics

The impact of caregiver personal characteristics (sociodemographic characteristics, personality traits, history of preloss depression, and preloss level of caregiver burden) on health outcomes after caregiving is clearly documented in research studies. With regard to sociodemographic characteristics, poor self-reported physical health40 and psychological distress26 were associated with older age among former family caregivers. Female caregivers, spousal and adult children caregivers, and caregivers reporting less education and lower income were more likely to report persistent depressive symptoms and psychological distress following the care recipient's death.26,41,42 Further, race and ethnicity were also found to influence post-caregiving psychological health, as white caregivers of persons with dementia or cancer reported fewer depressive symptoms than minority caregivers.43

While there is limited understanding of the role of personality traits in determining post-caregiving health outcomes, greater tendency toward neuroticism and less inclination toward extraversion were associated with depressive symptoms among caregivers who were currently providing care to a person living with dementia.44 This relationship was also documented in one study of former dementia caregivers, which linked neuroticism to increased depressive and anxiety symptoms and extraversion to better sleep quality during post-caregiving.13

Preloss depression is defined as a history of depression at any time prior to the care recipient's death. Research findings revealed that preloss depression is a significant correlate of post-caregiving psychological health in former dementia caregivers.13,42 Preloss depression was associated with greater post-caregiving depressive symptoms42 and poor self-reported sleep quality13 among former dementia caregivers.

Finally, preloss burden is the physical, emotional, social, and/or financial difficulties experienced by a caregiver while providing care to a chronically ill relative or friend prior to their death.45 Greater burden of care was linked to increased post-caregiving depressive symptoms42 and impacted spirituality negatively.46

Environmental characteristics

The environmental characteristics embedded in the model (history of the care recipient being placed in a long-term care facility, social support, cultural background, and resource utilization) were also supported by empirical and qualitative research on post-caregiving health outcomes among family caregivers. Several studies suggested that placing a care recipient in a long-term care facility may be detrimental to caregivers' long-term health. One study demonstrated the physiological consequences of Alzheimer caregiving by documenting associations between recent placement of a spouse in a nursing home facility and higher systolic blood pressure with postural changes.19 Former caregivers of terminally ill relatives who died at home, as opposed to a hospital or nursing home, reported significantly better mental health following their relative's death.40 Illuminating the long-term emotional impact of caregiving on dementia caregivers, one qualitative study revealed that guilty emotions about decisions made during caregiving, particularly the decision to place their relative in a long-term care facility, extended into post-caregiving.12

Empirical studies suggested that social support from family and friends and resource utilization during caregiving are significant environmental characteristics that impact post-caregiving health outcomes in this population. For example, former caregivers who received less family support during caregiving experienced worse mental health following the care recipient's death.40 Further, lower self-reported social support, smaller social networks, and reduced socialization were linked to increased psychological distress during post-caregiving.26,43 A caregiver's cultural background can also impact the caregiver's appraisal of potentially stressful circumstances, ability to cope effectively, and mental health.47 Caregiver resource utilization can also promote positive post-caregiving health outcomes. When provided during the caregiving episode, a multicomponent intervention composed of family counseling, education about dementia, and weekly caregiver support groups was linked to reduced depressive symptoms for longer than a year into post-caregiving.48 These antecedent personal and environmental characteristics influence the former caregiver's appraisal of the care recipient's death and the resolution of caregiving, the strategies employed to cope with stress emotions, and the caregiver's health over time.

Key concepts and processes

Stress and appraisal

The Post-caregiving Health Model is centered on the former caregiver's appraisal of the care recipient's death and the termination of the caregiving episode. If the caregiver appraises these circumstances negatively, then stress will occur in the form of a loss (eg, physical loss of a loved one), threat (eg, threat to their identification with caregiver role), or challenge (eg, difficulty with reintegrating into “normal” life).12 The potential for a stress response is not confined to the immediate post-caregiving period and may extend for many years, but this is highly individualized among different former caregivers.12

Emotion and coping

After a care recipient's death and the termination of a caregiving episode, former caregivers appraise the personal significance of their new circumstances and derive unique relational meanings that are highly variable among individual caregivers. Every relational meaning is linked to a corresponding emotion.22 Six of the 15 relational meaning-emotion pairs proposed in the Transactional Theory of Stress pertain to the health of former dementia caregivers and are supported by research findings. Therefore, the new model incorporates 3 relevant stress emotions (anxiety, guilt, and sadness) and 3 relevant positive emotions (happiness, relief, and gratitude).22,32

A former caregiver's appraisal will often result in 1 of 3 stress emotions: anxiety, guilt, and/or sadness.12,37,38 The incorporation of these particular emotions into the Post-caregiving Health Model is supported by studies that recount caregivers' experiences of anxiety,12 guilt,12,37 and sadness and depression12,38 following a caregiving episode. For example, former caregivers experienced guilt for many years after the death of the care recipient related to their perceived failure to prevent nursing home placement.12

Alternatively, 3 positive emotions can emerge from a former caregiver's appraisal of post-caregiving: happiness, relief, and gratitude.12,36,39 Researchers found that some caregivers experienced happiness, relief, and gratitude following the caregiving episode, validating their inclusion in the Post-caregiving Health Model. For example, former caregivers expressed relief from the stress associated with active caregiving36,39 and recognized personal growth related to their caregiving experiences.9

Congruent with the Transactional Theory of Stress, the experience of stress emotions prompts the need for former caregivers to utilize problem-focused coping strategies to actively alter the stressful circumstances, or emotion-focused coping strategies to revise the personal meaning of the termination of a caregiving episode.22,32 Both coping approaches allow former caregivers to modify the previous relational meaning that is paired with a stress emotion and derive a revised relational meaning that is paired with a positive emotion. In the event that problem- and/or emotion-focused coping strategies are not effective, the relational meaning is unchanged and stress emotions will persist. Conversely, the relational meaning alters and the stress emotion changes to a positive emotion when coping is effective.22,32 Ineffective coping has been linked to higher depressive and anxiety symptoms in dementia caregivers.12,49

For example, the end of the caregiving episode is appraised by one former caregiver as an irrevocable loss, provoking sad emotions. Several months following the care recipient's death, the caregiver effectively employs an emotion-focused coping strategy, positive reappraisal, to modify the relational meaning of post-caregiving. Through positive reappraisal, the caregiver discards the prior relational meaning (irrevocable loss) and creates a revised relational meaning that encompasses personal growth and self-gratification. Sad emotions are then transformed to gratitude. In general, former caregivers continuously appraise and reappraise post-caregiving following a caregiving episode and utilize available coping strategies when needed; therefore, former caregivers can fluctuate between positive and negative emotions indefinitely during post-caregiving.

Health outcomes

Consistent with the Transactional Theory of Stress, health is the major outcome of the Post-caregiving Health Model.12,22,38,46 Health is divided into 4 interrelated domains: physical, psychological, social, and spiritual. The domain of spiritual health, defined as a dimension of health pertaining to one's relationship with God, oneself, nature, and other human beings,50 was not included in the original model, but relevant research supported its inclusion in the new model.46 The impact of stress on the 4 domains of health in current and former caregivers is clearly documented in the literature. In the domain of physical health, family caregivers exhibit higher mortality rates than noncaregivers51 and chronic illnesses can persist for many years after caregiving ends.12 In the domain of psychological health, former caregivers revealed prolonged depressive symptoms,38 anxiety symptoms,12 and sleep disturbances.12 In the domains of social and spiritual health, former caregivers endure social isolation and loneliness following the care recipient's death,12 with the most burdened caregivers reporting weaker spiritual health.46

Case study

To illustrate the relevance and applicability of the Post-caregiving Health Model, the subsequent case example is provided. “Sandra” is a 55-year-old woman who provided care to her mother for a decade when she was living with Alzheimer-type dementia. She provided approximately 15 hours of care per day for 7 years, with some assistance and support from her 2 adult children. After 7 years, her mother experienced a significant cognitive and functional decline. No longer able to provide for her mother's growing needs at home, Sandra made the decision to place her mother in a long-term care facility. Sandra visited her mother daily in the facility and continued to provide care in the form of feeding, doing laundry, grooming, attending medical appointments, and advocating for her mother's needs until her death 3 years later.

Upon her mother's death, Sandra appraises the loss of her mother and the caregiving role. Sandra recalls that she promised her mother years ago that she would not place her in a nursing home. The meaning she derives from her appraisal of her losses is that she committed a wrongdoing by relinquishing the bulk of her caregiving responsibilities to a long-term care facility during the final years of her mother's life. Subsequently, Sandra experiences pervasive guilt. She employs the coping strategies available to her by seeking emotional support from friends (emotion-focused coping), but this approach is ineffective. She experiences persistent insomnia and nightmares, which result in chronic fatigue (physical health outcome) and social isolation (social health outcome). Social isolation leads to loneliness and depression (psychological health outcome). Two years following her mother's death, Sandra seeks treatment for depression and begins psychotherapy. Through psychotherapy, she learns new coping strategies and is able to reappraise her caregiving experience more positively. She reflects on her success in providing her mother with the support she needed to have a comfortable and peaceful death. As a result, she experiences happiness. Over time, her overall health improves as her depressive symptoms, insomnia, and fatigue diminish and she reengages with family and friends.

DISCUSSION

The Post-caregiving Health Model highlights the critical impact of personal and environmental characteristics, subjective appraisal, coping, and emotion on long-term health outcomes in former family caregivers of persons with dementia. Presently, there is a dearth of theoretical models to guide research on the understudied population of former dementia caregivers. The Post-caregiving Health Model offers a viable framework for studying long-term health outcomes among caregivers, as they transition from caring for a person with dementia to post-caregiving.

Nursing implications for research, theory, and practice

The Post-caregiving Health Model presents several noteworthy implications for nursing research, theory, and practice. While empirical and qualitative research findings supported the development of the model, the conceptual relationships depicted in the model must be validated with correlational and multivariate analyses in future nursing research. Specifically, nurse scientists should explore longitudinal trajectories of caregiver health outcomes to achieve a more nuanced understanding of post-caregiving patterns of health over time. Knowledge of post-caregiving health is generally limited to studies of depressive symptoms during the first 2 to 3 years of post-caregiving.38,52 Other long-term health outcomes, such as sleep quality, social well-being, and cardiovascular morbidities, as well as the potentially modifiable personal and environmental characteristics that impact these outcomes, remain partially understood in former dementia caregivers. Additional studies are needed to expand knowledge about these health outcomes and to elicit knowledge of relevant personal and environmental characteristics that are presently unknown, so that the Post-caregiving Health Model can be modified and validated further and used as a framework for future research in this population.

Frequently, caregivers lose their connections with formal sources of support, such as nurses, social workers, or long-term care workers, following the death of the care recipient.35 Therefore, former caregivers at-risk for poor health outcomes are not always screened, identified, and referred for support services or medical treatment in clinical practice. When the model is sufficiently tested and modified in accordance with empirical and qualitative research, it may be utilized to develop a risk assessment tool to identify current caregivers at-risk for poor health outcomes following a caregiving episode. A risk assessment tool would target the personal and environmental characteristics associated with poor post-caregiving health outcomes, and may be administered by registered nurses, advanced practice nurses, social workers, or physicians working in a variety of specialties (geriatrics, palliative care, and psychiatry) across diverse health care settings (long-term care, acute care, home care and hospice, primary care). These health care providers are well-positioned to facilitate referrals to support services or medical treatment for former caregivers identified as at-risk.

The Post-caregiving Health Model will guide better understanding of the effect of preloss factors on post-caregiving health outcomes and will subsequently facilitate interventions earlier in the caregiving trajectory. The model will guide future development of interventions that will target effective coping, such as psychotherapy, caregiver support groups provided upstream (preloss), or grief support groups tailored to former caregivers provided downstream (postloss). Specific interventions targeting (1) personal and environmental characteristics and (2) the appraisal-coping-emotion process are delineated in the Table.

Table. - The Post-caregiving Health Model: Antecedents, Processes, Outcomes, and Interventions to Be Tested
Causal Antecedents Processes Outcomes
Personal characteristics
  • Sociodemographic characteristics

  • Personality traits

  • History of preloss depression

  • Preloss level of caregiver burden

Environmental characteristics
  • History of the care recipient being placed in a long-term care facility

  • Social support

  • Cultural background

  • Resource utilization

Appraisal
  • Primary appraisal

  • Secondary appraisal

  • Reappraisal

Emotion
  • Positive emotions (relief, happiness, gratitude)

  • Stress emotions (anxiety, guilt, sadness)

Coping
  • Problem-focused (accepting responsibility, active coping, seeking instrumental support, planful problem-solving)

  • Emotion-focused (positive reappraisal, seeking emotional support, acceptance, humor, religion)

Four domains of health
  • Physical health

  • Psychological health

  • Social health

  • Spiritual health

Interventions to be tested:
  • Risk assessment tool to be administered before or after loss

Interventions to be tested:
  • Psychotherapy

  • Caregiver support group, preloss

  • Grief support group, postloss


Dementia caregivers comprise a distinctive population with unique needs and challenges related to stress, burden, and health. For example, dementia caregivers report greater burden than caregivers of people without dementia, and the influence of preloss burden on post-caregiving outcomes may be less impactful in nondementia caregiving populations.10 Therefore, this model was adapted in accordance with the literature pertaining to dementia caregiving and is not intended to be applied to other populations of caregivers in its current form. However, the Post-caregiving Health Model may be modified and expanded in the future and made applicable to former caregivers of individuals with other chronic illnesses outside of dementia.

CONCLUSION

Currently, nurse researchers are challenged by a paucity of theoretical models to guide further research on dementia caregivers and post-caregiving health. The Post-caregiving Health Model is a promising framework for future research related to this population, which underscores the prominent roles of appraisal, coping, and emotion in determining long-term health outcomes following resolution of a caregiving episode. The Post-caregiving Health Model presents multiple implications for nursing research, theory, practice, including the need for further validation and modification of the model, longitudinal studies that explore trajectories of health outcomes over time, and the development of risk assessment tools and interventions to facilitate screening of this population.

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Keywords:

Alzheimer disease; dementia; family caregiving; post-caregiving; stress; theoretical framework

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