Caregiver Distress

Home 5 Table of Contents 5 Psychological Disorders, Psychosocial Concerns, & Evidence-Based Interventions 5 Caregiver Distress

Author(s): Allison Applebaum, PhD

Editor(s): Beth Gardini Dixon, PsyD, Sharla Wells-DiGregorio, PhD

Introduction

In 2020, 53 million Americans served as caregivers to family members and friends, among whom over 3.5 million provided care to patients with cancer.¹ According to the National Alliance for Caregiving, a family caregiver provides unpaid care to a relative or friend to help them take care of themselves.¹ Due to medical advances, including sophisticated diagnostic tools and innovations in drug and immunotherapies, our ability to enhance survival has improved. In this setting, the role of caregivers has expanded to include ongoing responsibilities once performed by medical professionals. Caregivers assist with tasks that are physically, emotionally, financially, socially and existentially demanding. As such, the availability and health of supportive caregivers is essential. It is our responsibility as healthcare professionals to recognize the needs of caregivers as critical members of the healthcare team and to support them in their role.

Who are cancer caregivers?

Cancer incidence, prevalence, and mortality rates vary by sociodemographic factors including age, race/ethnicity, and socioeconomic status. However, caregiving does not discriminate: all demographic groups partake in caregiving. According to the Cancer Caregiving in the U.S. 2016 report,² cancer caregivers are:

Women (58%)	Working at least part time
53.1 years old	Median household income is $55,500
Approximately 65% report non-Hispanic White ethnicity, followed by Hispanic (16%), non-Hispanic Black (11%), and Asian (8%).	40% have a college or graduate degree
Majority provide care for a relative (88%), largely parents or parents-in-law (44%) and including spouses and partners (16%). Around 10% care for friends or community members.	Provide care, on average, 32.9 hours a week

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What do cancer caregivers do?

Activities	Examples
Assist with activities of daily living (ADLs; activities that allow an individual to live independently in a community)	Toileting, dressing, personal care, transferring, eating
Assist with instrumental activities of daily living (IADLs; complex skills needed to maintain one’s home and life)	Driving, managing medications, paying bills, housekeeping, home repairs
Nursing tasks	Administering injectable medications, taking vital signs, changing catheter bags, cleaning and dressing skin wounds
Emotional Support	Coping with depression, anxiety, fears of recurrence and dying, coping with functional changes
Decisional Support	Helping to make decisions about treatment and advance care plans

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What is the impact of caregiving on cancer caregivers?

As a result of the many responsibilities and challenges of caregiving, most caregivers will experience caregiver burden,³ a multidimensional response that includes the following:

Psychological distress, including symptoms of anxiety and depression that are often more severe than rates seen among the patients for whom caregivers provide care.
Physical health consequences such as cardiovascular disease, poor immune functioning, sleep disturbances, impaired immune responses, neuroendocrine dysregulation, chronic back pain, and arthritis.
Poor health-related behaviors, such as increased substance use and decreased exercise, limited use of preventative healthcare services, screening and follow-up care.
Spiritual and existential distress. Regardless of the patient’s prognosis, the caregiving trajectory naturally evokes thoughts about death. Caregivers are often faced with balancing a desire to focus on the present moment and on the patient’s recovery with feelings of hopelessness about an uncertain future.
Financial toxicity associated with caregiving is significant, and cancer caregiving is more financially onerous compared to other types of caregivers. Caregivers are often forced to give up work responsibilities or take leaves of absence to provide care, and the whole family may incur costs related to the patient’s treatment. Importantly, the financial toxicity of cancer and caregiving may be experienced for years after the patient’s death.
Unmet needs, or areas in which caregivers feel inadequate, insecure, unprepared, or unsupported to provide patient care. Younger caregivers, spouses, and women tend to report greater unmet needs. Moreover, greater unmet needs earlier in the treatment trajectory are associated with lower levels of mental and physical health quality of life in caregivers.

What are empirically supported approaches to addressing caregiver distress?

Over the past decade there has been a proliferation of empirically supported interventions developed to address the unique needs of cancer caregivers. Here we present an overview of some of these interventions. For more details about the below and additional interventions in development for caregivers, readers are encouraged to reference the Oxford textbook on Cancer Caregiving³.

Intervention	Goal	Techniques
Psychoeducation	Helps caregivers to gain in-depth knowledge and fact-based understanding of caregiving responsibilities to self-reflect on its impact on their overall wellbeing and day-to-day life.	Therapeutic alliance building Educating about fact-based and “how to” topical content Facilitating self-reflection and adaptive coping
Cognitive Behavioral Therapy for Caregivers (CBT)	Focuses on altering caregivers’ interpretation of a stressor to influence the emotional response in the presence of that stressor, thus promoting problem-solving skills.	Psychoeducation about the association between thoughts, feelings and behaviors Cognitive restructuring Behavioral activation
Dyadic Interventions	These approaches help patients and caregivers work together to manage the demands of illness, problem-solve important treatment decisions, and support one another as they cope with the stress of illness.	Communication skills training Discussion of role changes Facilitation of dyadic coping and stress management
Meaning-Centered Psychotherapy for Caregivers (MCP-C)	Assists caregivers in connecting to a sense of meaning and purpose despite the challenges and suffering endemic in caregiving.	Psychoeducation about four key sources of meaning (i.e., historical, attitudinal, creative, experiential) in life and caregiving Reflection on experiential exercise questions to facilitate connectedness to meaning

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General Intervention Guidelines

There are many historic barriers to psychosocial service use among cancer caregivers, including the time and financial cost associated with traveling to and from treatment centers. The Covid-19 pandemic has amplified the distress experienced by caregivers and concurrently, the benefits of telehealth to deliver high quality care to caregivers in great need. In addition to delivery of care over remote modalities when possible, the following guidelines–derived from the past 20 years of intervention research–are suggested:

Care should be delivered as early in the caregiving trajectory as possible	Care should be delivered individually to caregivers, when possible
In-person caregiver support should be delivered concurrent with patient care to limit additional burden on caregivers	While telehealth is powerful, a digital divide remains, and caregiver preferences should be accounted for
Interventions delivered in real time are more powerful than those that are self-guided, though some care is better than no care	Distress increases for caregivers as patients enter survivorship, so this is a period when caregivers need support
Group support is beneficial for caregivers who are isolated, but groups that are structured with weekly topics are strongly preferred to those that are open to all comers each week and lack a target focus of discussion.	Distress increases for caregivers of patients whose disease has recurred and/or is advanced, so this is a group in need of support.
Caregivers should be screened for distress and referred to appropriate levels of care and intervention that target specific unmet needs.	Continuity of support into bereavement is necessary for caregivers and protective against feelings of abandonment

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Conclusion

The past decade has seen a dramatic shift in oncology from hospital to homebased care, underscoring the critical role played by caregivers in our healthcare system, and the potential detrimental effects of caregiving. The experience of caregivers is undoubtedly impacted by our shifting public policy landscape, and readers are encouraged to consider ways in which policies such as the Caregiver Advise Record Enable (CARE) Act⁴ may facilitate the identification and screening of caregivers. Ultimately, comprehensive care for caregivers will require an infrastructure to support such care, including a means to document caregiver data and track outcomes over time.⁵

References & Links

National Alliance for Caregiving in Collaboration with AARP. (2020). Cancer Caregiving in the U.S. https://www.caregiving.org/caregiving-in-the-us-2020/
National Alliance for Caregiving in Collaboration with AARP. (2016). Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. https://www.caregiving.org/wp-content/uploads/2020/05/CancerCaregivingReport_FINAL_June-17-2016.pdf
Cancer Caregivers. (2019). (A. Applebaum, Ed.). Oxford University Press.
Reinhard, S. C., Young, H. M., Ryan, E., & Choula, R. B. (2019). The CARE Act Implementation: Progress and Promise. AARP Public Policy Institute. https://www.aarp.org/content/dam/aarp/ppi/2019/03/the-care-act-implementation-progress-and-promise.pdf
Applebaum, A. J., Kent, E. E., & Lichtenthal, W. G. (2021). Documentation of Caregivers as a Standard of Care. Journal of Clinical Oncolcology, 39(18), 1955-1958. https://doi.org/10.1200/jco.21.00402

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