A cancer diagnosis is often acute in onset and sparks an abrupt need for diagnostic and treatment decisions for the patient and family. Family members find that the patient’s cancer treatment trajectory poses physical, psychological, and social challenges, particularly for older patients. Shortened inpatient care and more complex outpatient treatment regimens require family members to become active partners in cancer care. This complex and changing care by family members challenges their knowledge and skills, as they do not know how to provide “cancer care.”
Family members often take primary responsibility for symptom management, wound care, pumps and equipment, transportation, mental health, support, and medication administration, while maintaining their own daily responsibilities, as well as those of the person with cancer, and coping with their emotional responses to the patient’s diagnosis and the uncertainty of the future. Uncertainty is intensified by the disease, treatment responses or failures, the patient’s emotional and physical responses, and how these demands and pressures bear upon family caregivers. In addition, cancer and cancer-related treatment may alter family functioning and communication patterns, family member occupational roles, and social roles. Increasingly, the health care system demands that informal caregivers behave more like formal care providers to achieve optimal patient clinical outcomes. In turn, caregivers require support and training, as well as coordination and communication with health care providers, to carry out the tasks of care. Patients’ outcomes depend on the partnerships among the patient and his or her family caregiver and oncology providers. Providers need to recognize that patients and family members react as a unit and thus both members of the dyad have a legitimate need for assistance and care.
The purpose of this chapter is to review caregiver burden: the needs, roles, and concerns of family caregivers (typically spouses or adult children) providing care to older cancer patients undergoing cancer treatment. Spouses of older patients will be the primary focus because they comprise the largest group of caregivers for the older adult. Implications and recommendations for improving practice suggest how providers can engage family caregivers to participate more effectively in patient care.
Definition of Burden
Family caregiving is defined as the provision of unpaid aid or assistance and care by one or more family members (defined broadly) to another family member with cancer. This care extends beyond the usual family activities, such as cooking or household chores that are a part of normal daily life; it also includes critical components of health care. Among them are symptom management, nutrition support, response to illness behaviors (e.g., anger), modification of usual roles, interpersonal care (e.g., communication), implementation of prescription regimens, acute episode management, use of community resources, and navigation of the health care system. Caregivers make major decisions, adjust to change and challenges, access resources for care, provide direct care, and coordinate patient visits with the health care system. Coordinating care (such as scheduling appointments, requesting medical records, and arranging transportation) can add substantially to caregivers’ responsibilities and may increase burden.
Burden, a negative reaction, is a multidimensional concept that stems from the imbalance between the social, psychological, and economic consequences permeating a care situation and the caregivers’ coping strategies to meet the demands of patient care. Caregivers who are unable to apply effective coping strategies to care demands may develop burden, which, if sustained, may lead to depression (see Assessment).
Caregiver depression is considered to be a secondary or long-term mood disturbance that may develop as a result of unrelieved stress or burden. Depression may emerge as a consequence of sustained caregiver burden and may be manifested by feelings of loneliness, sadness, isolation, fearfulness, and irritability. Caregiver depression may be less dependent on recent changes in the patient’s status and more dependent on whether the caregiver is able to employ coping mechanisms to alleviate burden before it progresses to depression. In order to stop the progression of caregiver burden into more serious psychological responses, it is imperative that health care providers communicate with patients and their families to define and prioritize appropriate care demands and care tasks. Defining expectations for family caregivers can be beneficial for patients and families, as well as for oncology providers. The establishment of clear instructions, along with education on what to expect in the way of possible side effects or complications and what can be done to manage care at home will engage family members in assisting the patient and will reduce their uncertainty. For providers, patients and families become allies in patient care management, as well as sentinels to detect and report problems and clinical complications. If these problems are identified early, they can help prevent interruptions or delays in treatment. While providing care may result in negative emotional and physical consequences for caregivers, it is important to remember that care provision can also engender satisfaction and meaning. Positive consequences, such as rewards, self-esteem, support, uplifts, and satisfaction, may provide a buffer to the negative effects of caregiving. More research is warranted to identify ways of expanding positive aspects of care in the face of increased and recurring care demands.
The patient is a 68-year-old woman who presented for evaluation of unusual behavior: she kept asking her 72-year-old husband whether he could smell the oranges. Computed tomography (CT) of the brain did not show a bleed, but magnetic resonance imaging (MRI) demonstrated a mass. Surgery and a biopsy were scheduled for the next day to have the tumor removed; the diagnosis confirmed glioblastoma multiforme.
The patient was experiencing left-sided weakness and extreme fatigue. She was unable to properly bathe and feed herself or use the bathroom unaided. Her husband had to quickly figure out the proper ways to take care of her. He set up a bed for her on the first floor of their house.
Every morning, the patient’s husband had to take her to the hospital for treatment. After treatment, she usually experienced nausea, loss of appetite, and increased fatigue. Her husband also had to learn to take notes at all of her doctor’s appointments so that he could effectively manage her care and help with symptom management.
As the patient’s condition began to deteriorate, her personality changed and she became very demanding and irritable. Her husband began to feel alone and distressed and didn’t know how to do deal with his situation. He appreciated the help that he received, but he began to lose sleep and felt physically and mentally exhausted. He wanted to take care of his wife, but he was having trouble coping and felt burdened with the required care.
The patient is a 68-year-old woman who presented for evaluation of unusual behavior: she kept asking her 72-year-old husband whether he could smell the oranges. Computed tomography (CT) of the brain did not show a bleed, but magnetic resonance imaging (MRI) demonstrated a mass. Surgery and a biopsy were scheduled for the next day to have the tumor removed; the diagnosis confirmed glioblastoma multiforme.
The patient was experiencing left-sided weakness and extreme fatigue. She was unable to properly bathe and feed herself or use the bathroom unaided. Her husband had to quickly figure out the proper ways to take care of her. He set up a bed for her on the first floor of their house.
Every morning, the patient’s husband had to take her to the hospital for treatment. After treatment, she usually experienced nausea, loss of appetite, and increased fatigue. Her husband also had to learn to take notes at all of her doctor’s appointments so that he could effectively manage her care and help with symptom management.
As the patient’s condition began to deteriorate, her personality changed and she became very demanding and irritable. Her husband began to feel alone and distressed and didn’t know how to do deal with his situation. He appreciated the help that he received, but he began to lose sleep and felt physically and mentally exhausted. He wanted to take care of his wife, but he was having trouble coping and felt burdened with the required care.
Caregiver Care Demands
Care demands include dealing with patients’ physical care, nutrition, spiritual support, symptom management, housekeeping, transportation, and financial needs. Regardless of the level or intensity of involvement, disruption of daily activities, competing demands, and unfamiliar physical care demands, those that produce anxiety or uncertainty have been shown to result in caregiver burden. Each type of caregiver task involvement demands different skills and knowledge, organizational capacities, and social and psychological strengths. Unmet demands for care are a large source of burden for family caregivers and have been associated with poorer caregiver health, higher costs of care, and higher incidence of psychiatric diagnosis. Caregivers also need information about their own self-care, the importance of networking with other caregivers, the importance of maintaining social support and contacts, and warning signs about their own levels of stress.
Care demands stemming from the presence of neuropsychiatric and cognitive dysfunction (e.g., agitation, inappropriate behavior, and apathy) are particularly stressful for caregivers. Management of cognitive and neuropsychiatric sequelae may produce higher levels of caregiver distress than assisting with impaired physical functioning.
Moreover, as the caregiving situation evolves, there are additional opportunities for role ambiguity, role confusion, and role overload. Negative consequences for the caregiver, such as increased burden, can arise as caregivers seek to balance caregiving with work, family, and leisure activities. The key to overcoming role ambiguity is to understand when new changes are likely to occur or when expectations shift as patient status changes.
J., 64, taught children with learning disabilities, while her husband B., also 64, worked from home as a consultant.
When B. was diagnosed with a brain tumor, words that J. could not understand swirled through her mind: grade III, astrocytoma, malignant neoplasm, radical resection, biopsy, parietal, craniotomy.
She read journals, blogs, and Web sites and was overwhelmed with the diversity of the information she was reading. The thought of potential care demands competing with her work hours caused considerable stress.
Direct-Care Tasks
For caregivers of older cancer patients, direct-care activities occur at end of life or among patients who are disabled. These direct-care tasks include dressing changes, catheter care, wound care, and equipment and medication management. Medication management may be particularly burdensome for family caregivers. Older patients often have numerous comorbid conditions in addition to cancer. For the caregiver, the severity of patients’ functional impairment and disability has been consistently shown to increase care demands on the caregiver and restrict other caregiver roles, thereby increasing caregiver distress. Caregivers should be encouraged to facilitate the patients’ return to normal physical functioning; however, this assistance may be problematic for older caregivers who have their own functional limitations. Providers can offer guidance and direction so caregivers can receive the assistance they need to provide care.
Cancer treatment can complicate preexisting medication regimens for other comorbidities, which means that caregivers must receive training, guidance, and access to comprehensive information to help them perform safe and effective medication administration. For example, oral-targeted therapies are especially complex; with oral agents, caregivers must rely on different sources for refilling prescriptions (specialty pharmacies, mail-order plans) and may rely on other mechanisms for reimbursement (e.g., private insurance and Veterans Administration benefits). Caregivers require education not only on how to administer medication but also on how to monitor for side effects and make critical decisions (e.g., dosing, withholding, and discontinuation).
Symptom management often becomes a primary role for caregivers as a result of patient treatment, and successful management of symptoms is associated with lower caregiver burden. Patients experience multiple and severe symptoms from treatment, including pain, nausea, fatigue, shortness of breath, and anorexia. Several researchers have demonstrated that patient depression is closely linked to caregivers’ mental health. This shared level of distress demonstrates that both the patient and caregiver need care consideration. Patients and their family caregivers should be screened for depression throughout the care trajectory and receive treatment if they are clinically depressed.
Increased symptoms can occur in elderly patients with multiple comorbid conditions and may also accompany different cycles of treatment or certain protocols. Interventions designed to help the caregiver with patient symptom management may lower the negative reaction and burden. Unfortunately, symptom resolution does not eliminate the caregiver role; caregivers report that they continue to provide assistance and are often on call for months after active treatment is over.
Employment
Caregivers must adapt their employment obligations so as to manage and meet care demands, which may result in missed days, work interruptions, leaves of absence, and reduced productivity. While vacation and personal time are always options, caregivers may also use the Family Medical Leave Act, which provides family members time to provide care. Generally, studies on employed caregivers report that 20% to 30% experience work-related challenges and distress. When faced with employment demands, women appear particularly at risk for emotional distress and greater perceived care demands. For some caregivers, however, employment provides respite and serves as a buffer to distress.
J., 64, taught children with learning disabilities, while her husband B., also 64, worked from home as a consultant.
When B. was diagnosed with a brain tumor, words that J. could not understand swirled through her mind: grade III, astrocytoma, malignant neoplasm, radical resection, biopsy, parietal, craniotomy.
She read journals, blogs, and Web sites and was overwhelmed with the diversity of the information she was reading. The thought of potential care demands competing with her work hours caused considerable stress.
Direct-Care Tasks
For caregivers of older cancer patients, direct-care activities occur at end of life or among patients who are disabled. These direct-care tasks include dressing changes, catheter care, wound care, and equipment and medication management. Medication management may be particularly burdensome for family caregivers. Older patients often have numerous comorbid conditions in addition to cancer. For the caregiver, the severity of patients’ functional impairment and disability has been consistently shown to increase care demands on the caregiver and restrict other caregiver roles, thereby increasing caregiver distress. Caregivers should be encouraged to facilitate the patients’ return to normal physical functioning; however, this assistance may be problematic for older caregivers who have their own functional limitations. Providers can offer guidance and direction so caregivers can receive the assistance they need to provide care.
Cancer treatment can complicate preexisting medication regimens for other comorbidities, which means that caregivers must receive training, guidance, and access to comprehensive information to help them perform safe and effective medication administration. For example, oral-targeted therapies are especially complex; with oral agents, caregivers must rely on different sources for refilling prescriptions (specialty pharmacies, mail-order plans) and may rely on other mechanisms for reimbursement (e.g., private insurance and Veterans Administration benefits). Caregivers require education not only on how to administer medication but also on how to monitor for side effects and make critical decisions (e.g., dosing, withholding, and discontinuation).
Symptom management often becomes a primary role for caregivers as a result of patient treatment, and successful management of symptoms is associated with lower caregiver burden. Patients experience multiple and severe symptoms from treatment, including pain, nausea, fatigue, shortness of breath, and anorexia. Several researchers have demonstrated that patient depression is closely linked to caregivers’ mental health. This shared level of distress demonstrates that both the patient and caregiver need care consideration. Patients and their family caregivers should be screened for depression throughout the care trajectory and receive treatment if they are clinically depressed.
Increased symptoms can occur in elderly patients with multiple comorbid conditions and may also accompany different cycles of treatment or certain protocols. Interventions designed to help the caregiver with patient symptom management may lower the negative reaction and burden. Unfortunately, symptom resolution does not eliminate the caregiver role; caregivers report that they continue to provide assistance and are often on call for months after active treatment is over.
Employment
Caregivers must adapt their employment obligations so as to manage and meet care demands, which may result in missed days, work interruptions, leaves of absence, and reduced productivity. While vacation and personal time are always options, caregivers may also use the Family Medical Leave Act, which provides family members time to provide care. Generally, studies on employed caregivers report that 20% to 30% experience work-related challenges and distress. When faced with employment demands, women appear particularly at risk for emotional distress and greater perceived care demands. For some caregivers, however, employment provides respite and serves as a buffer to distress.
Caregiver-Related Issues
Multiple caregiver characteristics have been linked with the degree to which a family member will perceive burden associated with providing care. Understanding these groups of caregivers is vital for identifying those at risk for burden. Gender, for example, has been established to be differentially related to caregiver distress. Overall, caregiving is reported to be more stressful for women (wives and daughters) than for men (husbands and sons), yet women have been shown to be more responsive to caregiver interventions.
Older age presents challenges, especially for caregiver spouses who may be on fixed incomes, and who may be in poor physical health themselves. Low personal and household incomes, loss of income, out-of-pocket expenses, and limited financial resources all contribute to caregiver stress for these older caregivers. However, studies have consistently revealed that adult children, especially daughters, exhibit higher levels of burden and lower well-being than older caregivers. This may be related to an increase in competing demands of family, work, leisure, and social obligations for younger caregivers.
Caregiver Health Conditions
Caregivers who are burdened consistently report lower levels of physical health. Although the sources of caregivers’ lower levels of physical health are multifaceted and to some extent unexplored, caregivers report higher levels of chronic conditions, pain, sleep disturbance, fatigue, headaches, lower immune functioning, altered response to influenza immunizations, slower wound healing, higher blood pressure, and altered lipid profiles. Caregivers have been shown to have marked changes in a broad array of neurohormonal and inflammatory parameters in the year after patient diagnosis. The most striking changes were in systemic inflammation and increased risk for coronary heart disease. Data suggest that caring for a family member with brain cancer may heighten vulnerability to coronary disease, as well as other metabolic, autoimmune, and psychiatric conditions sensitive to inflammation. Older caregivers with higher levels of depression, fatigue, and pain reported lower physical functioning.
In addition to burden, depression, and demands of the tasks of care, older caregivers may themselves have chronic diseases, which are often left unattended as a result of care demands. Caregivers may forgo personal health maintenance due to the pressures of providing care for others. Primary care providers need to encourage caregivers to manage their own health problems to continue providing quality care. Studies have shown negative caregiver outcomes when spouses are hospitalized. Providers must remain vigilant of caregivers’ health and the potential impact this may have on their ability to provide patient care.
L.’s husband has colorectal cancer and is unable to provide basic self-care as a result of disease progression. An aide comes in daily for an hour to bathe him. He has a colostomy that needs vigilant attention. The skin surrounding his stoma looks normal and the stoma is pink and appears healthy. The room is filled with medical supplies.
L. confided that her symptoms of congestive heart failure have gotten worse in the past couple of weeks. She states that she gets winded very easily and she has occasional chest pain. She also has a history of atrial fibrillation and she can feel her heart fluttering. She does not want her health to keep her from caring for her husband. She is intentionally keeping her health problems from her husband’s medical team. She states her diabetes is well controlled with insulin injections. She takes alprazolam for anxiety, which has gotten much worse since her husband’s diagnosis.
Social Support
The availability and use of social networks and social interaction have been shown to alleviate and prevent caregiver burden. Feelings of emotional connectedness and cohesion with one’s social network protects caregivers from burden and distress. Support such as understanding, counseling, and acting as a confidant may help moderate their burden. It is important for providers to communicate with caregivers on how to effectively monitor and manage their patients.
Relationship to the Patient
Wives, husbands, daughters, and sons approach the practice of caregiving in different ways. Spousal caregivers of older cancer patients have been shown to be at high risk for caregiver burden because they live with the patient, provide the most extensive and comprehensive care, maintain their role longer, often assume other household tasks, and tolerate greater levels of patient disability. Alternatively, spouses may have stronger established patterns of decision making with the patient, which can facilitate treatment and symptom management decisions. Other researchers report that adult children are at high risk for burden because of a larger disruption in lifestyle from competing demands (careers, children, their own spouse). Providers should assess the patient/caregiver relationship from the beginning and observe changes over time to understand when mounting strain, tensions, and burden may occur.
Preexisting discord in family relationships may be aggravated by the care process, by decision making, and by how different family members respond to the challenges of cancer care. Perceived family conflict, withdrawal, changes in family dynamics, and loss of intimate exchange with the cancer patient may be associated with a range of negative psychosocial patient outcomes, as well as with caregiver burden. Among caregivers in relationships that are less mutually satisfying, patient needs may restrict caregivers’ usual activities, which in turn may increase caregiver resentment and burden.
Socioeconomic Status and Insurance
Socioeconomic status poses unique challenges for caregivers of cancer patients. For most caregivers of spouses, Medicare provides basic coverage of health benefits, yet there are limits to coverage for ambulatory care services, some home care services, and limitations in payment for some drug protocols, particularly those that are newly approved by the FDA. The challenges for older cancer patients and their caregivers include copays and supplemental insurance for new expensive treatments. Medicare coverage is limited in what is covered and the amount covered. Out-of-pocket costs are often high. Concerns about financial status are pervasive; for example, oral agents may cost thousands of dollars per month, often with a copay.
A. is a 68-year-old woman whose husband was recently diagnosed with lung cancer. A. reports a very weak family support system. She has two daughters who are married and live out-of-state.
A. has a great deal of concern about her finances; her husband was laid off around the same time as the diagnosis and is having trouble finding new employment because of his physical limitations. She has extremely large copayments for the medical care. She would like more financial assistance but there seems to be none available and she feels the pressure of financial costs. Above all, A. wants to take care of her husband, and feels burdened by the financial uncertainty and by her husband’s future.
L.’s husband has colorectal cancer and is unable to provide basic self-care as a result of disease progression. An aide comes in daily for an hour to bathe him. He has a colostomy that needs vigilant attention. The skin surrounding his stoma looks normal and the stoma is pink and appears healthy. The room is filled with medical supplies.
L. confided that her symptoms of congestive heart failure have gotten worse in the past couple of weeks. She states that she gets winded very easily and she has occasional chest pain. She also has a history of atrial fibrillation and she can feel her heart fluttering. She does not want her health to keep her from caring for her husband. She is intentionally keeping her health problems from her husband’s medical team. She states her diabetes is well controlled with insulin injections. She takes alprazolam for anxiety, which has gotten much worse since her husband’s diagnosis.
Social Support
The availability and use of social networks and social interaction have been shown to alleviate and prevent caregiver burden. Feelings of emotional connectedness and cohesion with one’s social network protects caregivers from burden and distress. Support such as understanding, counseling, and acting as a confidant may help moderate their burden. It is important for providers to communicate with caregivers on how to effectively monitor and manage their patients.
Relationship to the Patient
Wives, husbands, daughters, and sons approach the practice of caregiving in different ways. Spousal caregivers of older cancer patients have been shown to be at high risk for caregiver burden because they live with the patient, provide the most extensive and comprehensive care, maintain their role longer, often assume other household tasks, and tolerate greater levels of patient disability. Alternatively, spouses may have stronger established patterns of decision making with the patient, which can facilitate treatment and symptom management decisions. Other researchers report that adult children are at high risk for burden because of a larger disruption in lifestyle from competing demands (careers, children, their own spouse). Providers should assess the patient/caregiver relationship from the beginning and observe changes over time to understand when mounting strain, tensions, and burden may occur.
Preexisting discord in family relationships may be aggravated by the care process, by decision making, and by how different family members respond to the challenges of cancer care. Perceived family conflict, withdrawal, changes in family dynamics, and loss of intimate exchange with the cancer patient may be associated with a range of negative psychosocial patient outcomes, as well as with caregiver burden. Among caregivers in relationships that are less mutually satisfying, patient needs may restrict caregivers’ usual activities, which in turn may increase caregiver resentment and burden.
Socioeconomic Status and Insurance
Socioeconomic status poses unique challenges for caregivers of cancer patients. For most caregivers of spouses, Medicare provides basic coverage of health benefits, yet there are limits to coverage for ambulatory care services, some home care services, and limitations in payment for some drug protocols, particularly those that are newly approved by the FDA. The challenges for older cancer patients and their caregivers include copays and supplemental insurance for new expensive treatments. Medicare coverage is limited in what is covered and the amount covered. Out-of-pocket costs are often high. Concerns about financial status are pervasive; for example, oral agents may cost thousands of dollars per month, often with a copay.
A. is a 68-year-old woman whose husband was recently diagnosed with lung cancer. A. reports a very weak family support system. She has two daughters who are married and live out-of-state.
A. has a great deal of concern about her finances; her husband was laid off around the same time as the diagnosis and is having trouble finding new employment because of his physical limitations. She has extremely large copayments for the medical care. She would like more financial assistance but there seems to be none available and she feels the pressure of financial costs. Above all, A. wants to take care of her husband, and feels burdened by the financial uncertainty and by her husband’s future.
A. is a 68-year-old woman whose husband was recently diagnosed with lung cancer. A. reports a very weak family support system. She has two daughters who are married and live out-of-state.
A. has a great deal of concern about her finances; her husband was laid off around the same time as the diagnosis and is having trouble finding new employment because of his physical limitations. She has extremely large copayments for the medical care. She would like more financial assistance but there seems to be none available and she feels the pressure of financial costs. Above all, A. wants to take care of her husband, and feels burdened by the financial uncertainty and by her husband’s future.
Caregiver Traits
Providers should assess caregiver traits and personal resources to help them alleviate distress. Dispositional optimism is a stable personality trait that can be thought of as a generalized expectancy of good outcomes, even in the face of adversity. Those with a sense of optimism feel they can better endure the negative effects of caregiving. Caregiver optimism has been associated with better quality of life, lower depression, less delay and anxiety in seeking care, and higher expectation of a positive outcome of medical care, making optimism a protective mechanism against burden. Optimists may be using different coping strategies than pessimists when confronted with stressful events. Pessimism has been found to be a warning sign for compromised health in the caregiver. Caregiver optimism, for example, is directly related to how family members perceive the care situation and, in turn, relates to the degree of burden caregivers will perceive. Another caregiver trait similar to optimism is mastery, which is the perception of their sense of worth as a caregiver and how they perceive their ability to meet the demands of providing care. Interventions are recommended to strengthen optimistic attitudes and weaken the pessimistic view, without giving a false sense of optimism when a cure is not possible. Mastery has been shown to positively influence caregivers’ level of burden, their depressive symptoms, and their response to care. Caregivers with a high sense of mastery have reported using more problem-focused coping strategies to meet care demands and ultimately have indicated a lower level of caregiver burden. Health care practitioners can strive to improve caregivers’ sense of mastery by enhancing their knowledge and skills and reducing their feelings of uncertainty, thus lowering the risk for emotional distress. Caregiver mastery can also be improved by implementing educational and cognitive behavioral interventions for meeting caregiver needs to provide care.
Risk Assessment for Caregiver Burden
Risk assessments for caregivers are vital to identify individuals at risk for negative outcomes and to provide information on resources for patient and caregiver care, such as cancer-related community resources (e.g., major cancer support organizations), as well as sources of additional information (e.g., Internet Web sites). The assessment should address major areas of functioning including role, social, and family functioning and should identify any practical problems stemming from care demands, such as managing equipment, finances, household tasks, arranging appointments, and transportation).
A risk appraisal measure (RAM), a brief screen for caregivers, has been used for dementia. It assesses multiple dimensions of risk and adverse outcomes in six areas: depression, burden, self-care and health behaviors, social support, safety, and patient problem behaviors. The RAM ( Table 26-1 ) appears to be an efficient and easily administered tool that could provide a “road map” of interventions for providers. Such a tool would increase the likelihood for a caregiver to receive assistance in the areas needed to prevent or relieve burden. ( See Table 26-1 ).
| Domain | RAM Items |
|---|---|
| Self-care and healthy behaviors | Sleep Rating of physical health |
| Patient problem behaviors | Information symptoms Feels stress with trying to help patient with ADL |
| Burden | Stress trying to meet responsibilities Strain around patient Feels good as a result of caregiving |
| Depression | Felt depressed last week |
| Social support | Satisfaction with help from friends Satisfaction with support from others |
| Safety | Felt like yelling Felt like hitting Able to leave patient alone |
Another caregiver assessment form has been developed by the American Medical Association. This assessment focuses on caregiver stress, depression, need for support, and need for decision making. Both assessment forms are brief and may be useful for screening caregivers for emotional and physical distress. A more in-depth multidimensional caregiver burden tool, such as the Caregiver Reaction Assessment, is suggested for long-term monitoring and planning interventions.
Overall areas to be included in a comprehensive assessment include: relationships between members of the dyad; necessary role changes; patient care requirements (symptoms, ADL, IADL); information needs about diagnosing treatment and expectations; care coordination; hours of care; capacity of caregiver; caregiver’s own health status and expected role in care and support; and resources available for care. ( Table 26-2 ).
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