Many older people are affected by multimorbidity, which indicates the coexistence of two or more chronic diseases in an individual.1 Cancer is more common in old age than earlier in life, and the aging population is rapidly expanding; consequently, the number of older adults with cancer will continue to increase.2 Cognitive decline is also a common condition among elderly adults. With an advancing aging population and prolonged cancer treatment regimes, the number of cancer patients with cognitive decline is also expected to increase.3
Cognitive decline is a dysfunction involving problems with memory, reasoning, concentration, formulating ideas, language, executive functions, or judgment.4,5 Regardless of its cause, cognitive decline affects the patients’ ability to manage their symptoms, verbally communicate with others, and make decisions.6–8
In addition to the challenges posed by cancer itself, cancer patients’ cognitive decline may cause additional suffering to caregivers. Previous studies have reported that cognitive decline affects the communication between patients and caregivers and changes their relationship.9–11 Caregivers of individuals with comorbid cancer and cognitive decline may not be confident about the patient’s wishes or preferences; nevertheless, caregivers are often required to coordinate the patient’s care and be proxy decision-makers.9–11 These distressing and painful experiences are burdensome for caregivers.
The burden placed on caregivers of end-of-life cancer patients who do not experience cognitive decline requires special attention. Family caregivers of cancer patients experience higher levels of burden when patients are transitioning from curative treatment to end-of-life care.12–14 A previous study reported that 66% of family caregivers experienced severe burden in caring for cancer patients at the end of life.14 Caregivers typically support patients in all aspects of life, from daily living to cancer-related symptom management and medical care; thus, they cannot avoid facing the reality that the death of their loved one is approaching.12–14 As a result, caregiver burden in relation to cancer patients refers to the physiological, psychological, social, economic, and emotional impact on the caregivers’ health.15
Caregivers of cancer patients with cognitive decline at the end of life suffer from severe burden, partly because of the patient’s cognitive decline but also because of the difficulty in confronting a loved one’s death. The complexity of caregiver burden in this population suggests that its definition in relation to other illnesses or situations may not encompass the burden experienced by this population. Accurately defining “caregiver burden in relation to cancer patients with cognitive decline at the end of life” may help nurses assess caregivers’ experiences and provide holistic care. Accordingly, this study aimed to define it by elucidating its conceptual structure based on its attributes, antecedents, and consequences.
In this study, we defined caregivers as individuals, such as adult children, spouses, parents, friends, and neighbors, who provide care that is typically uncompensated and at home, consumes significant amounts of time and energy for months or years, and requires them to perform tasks that may be physically, emotionally, socially, or financially demanding.16
The study employed the concept analysis methodology proposed by Walker and Avant.17 This method was chosen for its ability to support critical thinking and highlight the differences between related concepts. It consists of eight steps: (1) selecting a concept; (2) determining the aim of analysis; (3) identifying all uses of the concept; (4) determining the defining attributes; (5) constructing a model case; (6) constructing borderline and contrary cases; (7) identifying antecedents and consequences; and (8) defining empirical referents.
Selecting the Concept (Step 1)
The concept of caregiver burden in cancer patients with cognitive decline at the end of life is significant in the field of oncology nursing. The lack of awareness about the distinct caregiver burden of this population may impact the patient’s quality of death by affecting behaviors such as decision-making about the place of death and symptom management. This concept was selected for analysis to fill a gap in the literature.
Determining the Aim of Analysis (Step 2)
This analysis aimed to identify a distinct caregiver burden for this population and consider effective interventions for the future.
We searched the CINAHL, MEDLINE, and Web of Science databases for relevant articles published between 2000 and 2020 in the medical, nursing, and social science fields. We used the following keywords: “cognitive decline OR dementia,” AND “cancer OR oncology,” AND “burden,” AND “caregiver OR family.” First, we removed duplicates and excluded articles whose screened titles and abstracts did not meet the inclusion criteria. Second, full-text versions of potentially relevant studies were assessed for eligibility. Finally, 22 papers were included in the concept analysis (Figure 1).18–39
We extracted basic information, definitions, attributes, antecedents, and consequences concerning the concept of caregiver burden in this population. The descriptive data were divided into codes according to their meanings and classified into categories and subcategories. This analysis was initially performed by the main author and subsequently reviewed by the second and third authors to ensure its validity.
The attributes, antecedents, and consequences of the concept of caregiver burden in relation to cancer patients with cognitive decline at the end of life are summarized in the following section and displayed in Figure 2.
Caregiver Burden in Dictionaries
Step 3 of Walker and Avant’s method involves identifying all discoverable uses of a concept. In some dictionaries, the term “caregiver burden” was not found; however, “caregiver” was defined as “a person, typically a professional or close relative, who looks after a child, elderly person, invalid, etc.” and “burden” was defined as “that which is borne, a load. An obligatory expense.”40
Caregiver Burden in the Literature
Historically, “caregiver burden” has been defined primarily in relation to family members of patients with dementia or mental illness. In 1980, Zarit et al defined caregiver burden as “discomfort experienced by a primary caregiver of an older adult and his or her health problems, psychological well-being, finances, and social life” (p. 651).41 In 1998, Hoffman and Mitchell defined caregiver burden related to chronic disease as “a consequence of a process comprising a number of interrelated conditions, including the socioeconomic characteristics, the resources of the caregivers, and the stressors to which they are exposed” (p. 10).42 In 2020, Liu et al defined caregiver burden as “the level of multifaceted burden perceived by the caregiver from caring for a family member or loved one over time” (p. 17).43
Step 4 of Walker and Avant’s method consists of describing the defining attributes of a concept through a list of items that differentiate the specific concept from similar ones. In this study’s concept analysis, three categories—“a responsibility with uncertainty over the patient’s intentions,” “multidimensional pressures due to two deteriorating diseases,” and “facing the loss of the patient before death”—and 16 subcategories were extracted as attributes (Figure 2, Table 1).
Table 1. -
Attributes of Caregiver Burden in Relation to Cancer Patients with Cognitive Decline at the End of Life
|A responsibility with uncertainty over the patient’s intentions
||Identity as caregivers
||Caregivers establish their identity as caregivers
|Caregivers take responsibility for their role
|Caring with the patient’s intentions unclear
||Caregivers caring for a patient with uncertainty about the patient’s wishes for end-of-life care
|Caregivers are not confident that they are doing the right thing for the patient
|Heavy responsibility with proxy decision-making
||Required to make proxy decisions for end-of-life care as a matter of course
|Caregivers bear the heavy responsibility for making serious decisions about the patient’s end-of-life care
|Not prepared for the role of decision-maker
||Caregivers felt a mismatch between patient and caregiver’s perception of the disease condition and prognosis
|Caregivers cannot listen to patient’s true feelings
|The complexity of decision-making
||Very little time to spend on decision-making
|Few choices when it comes to making decisions
|Multidimensional pressures due to two deteriorating diseases
||Difficulty in adapting to the new role
||Two serious deteriorating diseases bring multiple challenges because cancer symptoms affect cognitive function
|Difficulty fulfilling a new responsibility or adapting to a role change
||Caregivers expend significant energy in meeting increasing care demands
|Sacrifice of caregiver’s own life
||Caregivers spend considerable time on caregiving
|Even when caregivers are not with their patients, they cannot stop thinking about them
|Time-sacrificing support restricts the caregiver’s life
|Caregivers quickly lose their social connections
|Caregivers cannot achieve the minimum amount of rest
||Caregivers take leave from their work to be caregivers
||Caregivers feel financial difficulties
||Inequality among family members
|Frustration at other family members
||The sense of guilt and regret experienced by family caregivers
|Anger due to uncontrolled situations
|Deep sorrow due to the patient’s suffering
|Excessive worry, expecting the worst, taking tension out on others
|Facing the loss of the patient before death
||Loss of the patient’s preexisting personality
||Caregivers feel the change in patient’s personality (e.g., aggressiveness, disruptive behaviors)
|Loss of preexisting relationship
||Caregivers feel the loss of preexisting patient-caregiver relationship
|Caregivers face the patient’s inability to recognize the caregiver
|Loss of communication methods
||Caregivers cannot express their gratitude or say goodbye because of difficulties in verbal communication
|Losses occur before physical death
||Caregivers are with the patients, but they feel lonely due to losing the patient before death
A Responsibility With Uncertainty Over the Patient’s Intentions
At the end of life, sharing the patient’s wishes and intentions for the dying process and how and with whom the patients want to spend their last moments is important to their loved ones. However, cancer patients with cognitive decline cannot express their true feelings on end-of-life care.37 If the patient cannot express their own wishes, caregivers are often required to make decisions instead of the patient,19,22,26,29,37 including on complex issues such as place of death, use of specific treatment, and medical care at home. Caregivers want to know the patient’s intentions for end-of-life care, their wishes, and hopes so as not to leave any unfinished business and regret. However, in this challenging situation, they feel heavy responsibility but have no clarity about the patient’s intentions.
Multidimensional Pressures Due to Two Deteriorating Diseases
Previous studies have demonstrated that caregiver burden in this population involves multidimensional pressures caused by the presence of comorbid deteriorating diseases. It is unique to this population that cancer-related symptoms and cognitive function are correlated. The patient’s cognitive decline makes it difficult to assess their cancer-related symptoms and presents multiple challenges.18,22,31,33,34 Caregivers struggle to adapt to the role20,21,23,24,26,33 and expend significant energy in meeting increasing care demands.19,24,26,28,39 They spend considerable time on caregiving,18,22 which reduces their quality of life,24,25,39 and compromises their social connections.26,33,39 One study reported that caregivers could not achieve the minimum amount of rest.22 Some caregivers take leave from their jobs to dedicate themselves to caring.24,36 In these conditions, caregivers sometimes encounter financial difficulties.20,26,35 Inequality within families is also common, and caregivers frequently experience frustration with other family members.20,21,24 Different emotions such as anger, sadness, anxiety, guilt and regret, helplessness, sorrow, excessive worrying, expecting the worst, and feeling nervous have also been reported.19–21,23,26,29,37,38
Facing the Loss of the Patient Before Death
Many caregivers face several losses with regard to the patients even before death, as patients remain physically present but become increasingly absent psychologically. Although verbal communication at the end of life may intensify the family-patient relationship and facilitate a peaceful death, caregivers cannot express their gratitude, say goodbye, or share words of love.29,37,38 Caregivers often encounter the situation of not being recognized by the patient, which causes them to experience painful emotions.29,38 Although caregivers are with the patients, they often experience a feeling of loss because the patients may not be present as they were before.22,24 These experiences make it difficult to follow the process of normal anticipatory grief. Facing the loss of the patient before death is a feature of this population.
Based on the findings of this concept analysis, caregiver burden in relation to cancer patients with cognitive decline at the end of life is defined as follows: the pressure experienced by families in a multidimensional way due to the two deteriorating diseases in their process of facing the loss even before the deaths of patients and fulfilling their responsibilities as a family without knowing the patients’ own intentions.
Steps 5 and 6 of Walker and Avant’s concept analysis consist of the construction of the model and borderline and contrary cases, respectively. The following cases helped define the concept of caregiver burden in relation to cancer patients with cognitive decline at the end of life: the model case includes all defining attributes of the concept, the borderline case features most of the defining attributes, and the contrary case has no defining attributes.
Jane (aged 50 years) had lived with her father (aged 78 years) since her mother died. Jane’s father had dementia and terminal lung cancer. Her sister lived in another city. His condition worsened rapidly, and he became unrecognizable to Jane, but she cared for her father even though it meant sacrificing her own time. Jane knew her father could not recover from these conditions; therefore, she felt permanent loss before his death (facing the loss of the patient before death). Unceasing caregiving left her with very little time to rest. Jane cared for him alone and left her job. She was frustrated with her sister (multidimensional pressures due to two deteriorating diseases). The physician was worried about her fatigue and recommended she decide that his place of death not be at home. She decided to admit her father to a hospice, but she was not confident that it was the best choice (a responsibility with uncertainty over the patient’s intentions).
Jane (aged 50 years) had lived with her father (aged 78 years) since her mother died. Her sister lived in another city. Jane’s father had dementia and terminal lung cancer. He could not perform daily living activities because severe symptoms had worsened his cognitive function; therefore, Jane cared for him alone and left her job. Jane was frustrated with her sister (multidimensional pressures due to two deteriorating diseases). She felt the loss of the preexisting father-child relationship and could not even thank him due to verbal communication challenges (facing the loss of the patient before death). However, Jane understood her father’s intentions for end-of-life care, which informed her proxy decision-making; hence, she chose a home hospice care service.
Jane (aged 50 years) had lived with her father (age 78 years) since her mother died. Her sister lived in the neighborhood. Her father was dying from terminal lung cancer. Jane’s family had discussed end-of-life care repeatedly throughout the cancer trajectory. Her father preferred to receive less aggressive cancer treatment and stay home for as long as possible. Consequently, he was provided with comprehensive and ongoing home palliative care and he achieved symptomatic relief. With her sister’s support, Jane had sufficient rest. Jane’s family could stay together and had a peaceful time. Furthermore, Jane could thank and say goodbye to her father. In this example, none of the attributes are demonstrated.
Step 7 of Walker and Avant’s concept analysis method consists of identifying the antecedents and consequences. Before the occurrence of a concept, events or named antecedents must occur. The antecedents were classified into three categories—“physical needs of caregiving,” “the cognitive decline of the patient,” “the patient is dying”—and eight subcategories (Figure 2, Table 2).
Table 2. -
Antecedents of Caregiver Burden in Relation to Cancer Patients with Cognitive Decline at the End of Life
|Physical needs of caregiving
||Worsening of patient’s irreversible cancer symptoms
||The patient’s physical function is declining
|Caregivers do not know how to alleviate patient’s symptoms
|As death approaches, the patient experiences irreversible symptoms
|Patient’s reliance on specific caregivers
||The patient relies on the caregiver, and their existence is irreplaceable
|Required day-to-day physical support
||Managing the day-to-day support for the patient such as bathing, clothing, shopping, and diet
|Physical support required by patients
|The cognitive decline of the patient
||Reducing decision-making ability
||Reducing the patient’s ability to participate in decision-making
|The patient wants family members to make proxy decisions
|Difficulty with verbal communication
||The patient cannot express their preferences, wishes, and hopes
|Caregivers cannot communicate with the patient as usual
|Needs for cognitive support
||As death approaches, cognitive function worsens and requires cognitive support
|The patient is dying
||Awareness of patient’s death
||The caregiver is aware that the patient’s death is approaching
|Caregivers prepare for the patient’s death
|Attachment to the loved one
||Caregivers feel connected to the patient and want to spend more time with them
Physical Needs of Caregiving
As their death approaches, due to the nature of progressive diseases, the patients experience irreversible symptoms18,23,24,29,36 and their physical function rapidly worsens.18,23,25,26,29,30,32 In these situations, the patient’s caregiving needs increase further. Some cancer patients, at the end of life, are highly dependent on medical care such as narcotics and oxygen therapy. Studies indicate that caregivers take charge of all day-to-day physical support for patients with cancer-related symptoms such as severe fatigue, pain, and dyspnea.20,21,24–26,32,36,39 However, many caregivers do not know how to assess and alleviate patients’ symptoms and meet their physical needs.34,35
The Cognitive Decline of the Patient
Many caregivers want to know the patient’s intentions for the dying process to avoid unfinished business and regret; however, cancer patients with cognitive decline at the end of life cannot sufficiently express their preferences for end-of-life care, wishes, and hopes.21,30 Patients cannot participate in the decision-making during the critical moment of determining their own death.22,26,28,30,33,37 Caregivers and patients cannot verbally communicate as usual,18,21,37,38 even though caregivers wish to proactively communicate with the patient at the end of life to strengthen the family-patient relationship.
The Patient Is Dying
At the end of life, caregivers know that they cannot avoid their loved one’s death.22,26,37,38 Some caregivers prepare for the patient’s death22,26,38 by spending more time with them.20,38 In this concept analysis, many caregivers were aware of the disease conditions and faced an unacceptable situation.
The consequences were classified into three categories—“caregiver’s physical and psychological health deterioration,” “decreasing caregiver’s coping abilities,” “deterioration in the quality of death”—and eight subcategories (Figure 2, Table 3).
Table 3. -
Consequences of Caregiver Burden in Relation to Cancer Patients with Cognitive Decline at the End of Life
|Caregiver’s physical and psychological health deterioration
||Impact on the caregiver’s physical health
||Sleep disorders, insomnia
|The caregiver’s self-awareness of their bad physical condition
|Increased mortality risk
|Impact on the caregiver’s psychological health
||The caregiver’s regret after bereavement
|Poor mental health
|High levels of anxiety
|Decreasing caregiver’s coping abilities
||Difficulty in coping with caregiver burden
||The caregiver cannot cope with ambivalent feelings
|The caregiver needs information and direction, but they cannot seek help for themselves
|Narrative-based support is insufficient
||The caregiver needs emotional support from others
|More support is needed in consideration of their own narrative
|The caregiver desires proactive communication between the caregiver and healthcare providers
|Unable to obtain resources
||Less use of formal social support
|Caregivers do not seek support themselves
|Deterioration in the quality of death
||The caregiver’s suffering in the dying process
||Higher burden causes caregiver to have feelings of suffering during the dying process
|Dissatisfaction with end-of-life discussion
||Higher burden leads to dissatisfaction with end-of-life discussion
|Preparedness for patient’s death
||Higher burden leads to inability to be prepared for patient’s death
Caregiver’s Physical and Psychological Health Deterioration
One of the most common consequences of caregiver burden in this population is the impact on the caregiver’s physical and psychological health. Caregivers are aware of their bad physical condition22,24,26,33,39 such as sleep disorders and insomnia.22,29 Moreover, their mortality risk increases.22,33 They continue to suffer after bereavement, experiencing regret,23,38 poor mental health,18,19,23,25,27 and high levels of anxiety.18,19,25,29,30,38
Decreasing Caregiver’s Coping Abilities
When caregivers confront these difficult situations, they often cannot cope with their feelings.39 They need information and direction, but they cannot seek it themselves.19,26,29,30,35,38 They need more emotional support from others18,35,38 and hope it will be in consideration of their own narrative.19,34 In particular, they wish to establish proactive communication with healthcare providers21; however, they are unable to obtain resources because they have less social support19,21,24,27,36 or because they do not seek support by themselves.19,28
Deterioration in the Quality of Death
When they experience a higher burden, caregivers often suffer during the patient’s prolonged dying process.22 They are dissatisfied with end-of-life discussions18,32 and cannot prepare for the patient’s death.22,38
Step 8 requires identifying empirical referents to make the concept of interest measurable. The following instruments allow researchers and nurses to recognize or measure the defining attributes: the Zarit Burden Interview,19 Caregiver Strain Index,27 Caregiver Burden Scale,29 Caregiver Reaction Assessment (CRA),25 and CareGiver Oncology Quality of Life questionnaire.39 The CRA, which measures burden from multiple dimensions, is the most frequently used instrument.44 It has been administered to family caregivers of patients with cancer, people with dementia, and older adults. However, none of these instruments, including the CRA, are specialized for measuring caregiver burden in relation to cognitive decline in cancer patients.
This concept analysis reflects the complexity of comorbid diseases at the end of life. Through the review of previous studies, we proposed a conceptual framework of caregiver burden in caregivers of end-of-life cancer patients with cognitive decline (Figure 2).
This section describes three attributes examined in our concept analysis. The first attribute, “a responsibility with uncertainty over the patient’s intentions,” is reported in most studies. In particular, as the patient’s death approaches, caregivers struggle to make complex decisions concerning the patient within a limited time without knowing the patient’s intentions. It is necessary to reduce this uncertainty and share the caregivers’ responsibilities. To reduce uncertainty, we should infer the patients’ wishes by carefully deliberating the patients’ past intentions with the caregivers. Specifically, it is important to infer what is most important to the patient, what the patient would or would not have wanted, and what decisions the patient would have made. Shared decision-making may help reduce the caregiver burden for proxy decision-makers. Sharing wishes and preferences for care across all people involved through shared decision-making may reduce the burden on specific caregivers and provide care concordant with the patient’s values. A discussion focused on the patient’s values may be helpful and practical for reducing burden even if their wishes cannot be actualized.
For the second attribute, caregiver burden was described as having multidimensional pressures associated with caregiving because of comorbid deteriorating diseases. Caring for patients with severe symptoms and managing medical care consume considerable time, which restricts the caregivers’ lives. In these stressful situations, caregivers need highly individualized care that considers the distinctive characteristics of the comorbid diseases.19,34 It would be desirable for oncology and geriatric care teams to support caregivers, as breaking the vicious circle of cancer-related symptoms and cognitive decline is difficult. In addition, an intervention by two specialized care teams with specific knowledge and skills of the comorbid conditions may increase the caregivers’ choices. We need to assess the caregivers’ experiences from various perspectives and coordinate care services to improve the quality of life of patients and their caregivers.
Finally, we discuss the attribute “facing the loss of the patient before death” such as through changes in personality and verbal communication methods. The loss of communication causes one of the most painful emotions for the caregivers. This makes it difficult for the caregivers to follow the normal process of anticipatory grief. This finding is consistent with many earlier studies regarding the caregiver burden of dementia. Previous studies on caregivers of dementia patients demonstrated that caregivers go through multiple phases of loss throughout the disease trajectory.45 Therefore, we must focus on these losses and support grief work. We must alleviate the patient’s symptoms to allow caregivers to feel closeness with the patient and share their emotions, and assist caregivers in adjusting to the many losses they endure.
Implication for Nursing
Supporting Proxy Decision-Making
Sharing the patient and caregiver’s history or experiences is important for discussing the patient’s present wishes and preferences with the caregiver. Furthermore, shared decision-making focused on the patient’s values may be helpful and practical for reducing caregiver burden even if the caregivers do not achieve their goals in practice.
Support to Alleviate Multidimensional Pressures
The importance of integrated and holistic care at the end of life is now recognized in reducing the caregiver burden. Collaborative intervention by oncology and geriatric healthcare professionals and good communication leads to high-quality end-of-life care. Teams with specialized skills and knowledge can alleviate the patient’s suffering. Nurses can assess physical, psychosocial, and spiritual needs from various perspectives and ask caregivers directly if they need care. In the future, nurses need to coordinate integrated and holistic care in advance.
Support to Bridge the Relationship Between Patients and Caregivers
This concept analysis found that caregivers of cancer patients with cognitive decline at the end of life face many losses. In particular, they experienced severe burden when unable to maintain the preexisting level of verbal communication with the patient. Therefore, we encourage to caregivers to bridge the relationship between the patients and themselves with alternative, nonverbal forms of communication. According to Swanson’s theory of caring, being with someone is being emotionally present for the other person; sharing feelings, such as joy or sorrow, without burdening the one cared for; seeing the other person; and understanding that their experiences are of great importance.46 We must support caregivers to allow them to spend enough time by their loved one’s side and find meaning from being with them. Nurses need to provide opportunities for caregivers to be with patients such as by alleviating severe cancer-related symptoms.
The studies included in the analysis referred to caregiver burden related to patients’ cognitive decline at the end of life; thus, caregiver burden was presented in a broad context based on a heterogeneous group of patients with various causes of cognitive decline. Restricting the search to the literature on a homogenous group of individuals with cognitive decline, such as cancer patients with dementia, may provide different results. Another limitation is that most of the studies included in the analysis were restricted to Western counties; therefore, the findings may not be universally applicable.
This concept analysis sought to define the concept of caregiver burden in relation to cancer patients with cognitive decline at the end of life. Caregiver burden in this population was defined as the pressure experienced by families in a multidimensional way due to the two deteriorating diseases in their process of facing the loss even before the deaths of patients and fulfilling their responsibilities as a family without knowing the patients’ own intentions. This definition provides a deep understanding of the caregivers’ experiences and suggests improvements in nursing practice.
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