The Importance of Honoring Family Caregiver Burden: Challenges in Mental Health Care Delivery

Abstract

There is growing recognition of the profound mental health challenges faced by the 53 million American family caregivers, and the need for increased access to psychosocial care for this vulnerable population. Outside of the context of care delivered in the community, family caregivers are increasingly seeking support from hospital-based counseling centers. This trend – combined with a public policy landscape that promotes the delivery of caregiver-specific supports and services – highlights challenges faced by mental health professionals who bill for services to provide and bill for psychosocial care to family caregivers. In this paper, we discuss three interrelated challenges that psychosocial providers face in providing care to family caregivers and which our field needs to confront as healthcare transfers more responsibilities onto the shoulders of family caregivers: (1) caregiver burden is not recognized as a formal diagnosis; (2) current documentation for caregivers must be linked to patient encounters; and (3) support for family caregivers occurs within larger systematic barriers to mental health integration. By accurately describing and documenting caregiver burden and advocating for increased parity in mental health coverage, we hope that the field can bridge the gap between emerging research, momentum in policy, and available psychosocial services for this vulnerable population.

The 53 million family caregivers in the United States (U.S.) today serve as the invisible backbone of our healthcare system. The responsibilities of caregivers are profound and rapidly increasing: family caregivers shoulder tasks the are physically, emotionally, socially, and financially demanding (AARP National Alliance for Caregiving, 2020). Over the past decade there has been a dramatic shift to home-based care, a shift amplified by the COVID-19 pandemic. Oncology care leads the way (Corrie et al., 2013; Handley, Bekelman, & Binder, 2020), and family caregivers of patients with cancer are increasingly relied upon to manage complex medical care at home (Applebaum et al., 2023). These models of care have profound benefits for patients and healthcare systems but depend on the availability and willingness of caregivers to take on patient care responsibilities, including medical and nursing tasks once assumed by trained healthcare professionals. Such responsibilities come at a high psychosocial cost and put caregivers at risk for their own medical and mental health problems. In fact, cancer caregivers may be at greater risk than the patients for whom they provide care for anxiety, depression, insomnia (Askari, Madgaonkar, & Rowell, 2012; Braun, Mikulincer, Rydall, Walsh, & Rodin, 2007; Covinsky, 1994), and even posttraumatic stress disorder (Acquati, Miyawaki, & Lu, 2020; De Padova et al., 2021; Hudson, Thomas, Trauer, Remedios, & Clarke, 2011; Moschopoulou, Hutchison, Bhui, & Korszun, 2018; van Warmerdam et al., 2019). Strikingly, caregiver distress often surpasses that experienced by patients and when left untreated, increases exponentially across the caregiving trajectory, and can contribute to mental health challenges in bereavement. Such emotional distress also has a direct bearing on the quality of the care caregivers provide to patients.

Recently, there has been national recognition of the distress experienced by caregivers, and the importance of providing education and support so that the potential negative impact of caregiving can be mitigated. For example, the RAISE Family Caregiving Advisory Council made recommendations to Congress in 2021 and a 2022 national strategy that included the development of services and supports for family caregivers (Administration for Community Living, 2022). In 2022, the National Academies of Science, Engineering, and Medicine held a workshop on Family Caregiving for People with Cancer and Other Serious Illnesses (2022) that highlighted exemplar caregiver support services that could serve as models to be disseminated. Additionally, the American Rescue Plan Act (ARPA) increased home-based services and supports available to caregivers, though implementation is state specific (National Academy for State Health Policy, 2021). Moreover, over the past decade, the state of the science of psychosocial intervention research focused on addressing the needs of cancer caregivers has accelerated, and nearly 75 interventions have now been developed and tested to support cancer caregivers (Ferrell & Wittenberg, 2017; Northouse, Katapodi, Song, Zhang, & Mood, 2010).

There remains, however, a significant disconnect between national recommendations, the state of the science of intervention research, and current clinical practice. Outside of the context of research trials–the primary mechanism through which those 75 interventions were tested–the ability for family caregivers of patients with various illnesses and disabilities to access targeted psychosocial care remains limited. To date, few healthcare systems have established clinical services for caregivers (Odom et al., 2023), which is due, in part, to a lack of infrastructure available to support such clinical services. Moreover, unless clinical services are supported entirely by institutional funds or philanthropy, a mechanism needs to be established for caregivers to be billed for psychosocial care. For this to occur, caregivers must have their own medical record in which their diagnosis and services rendered can be documented (Applebaum, Kent, & Lichtenthal, 2021). Even once medical records are established, however, there remain fundamental challenges to accurately documenting caregivers’ psychosocial functioning and billing for services received.

The messaging and national recommendations are clear and consistent: caregivers need support, now. In a synthesis of emerging policies and analysis of the care gap for caregivers, the following conclusion is stated: “For healthcare and service providers, the main recommendation was to integrate caregivers into regular practice” (Gaugler, 2021). Similarly, The National Alliance for Caregiving recently highlighted several barriers to integrating caregivers into medical care (Bilbrey, 2021). Their white paper advocates for the creation of standards for caregiver engagement, including caregiver assessment as part of clinical workflow, and, importantly, access to CMS codes to facilitate caregiver engagement. They poignantly conclude their article after reviewing the barriers to providers’ understanding billing requirements or pathways for caregiver engagement that, “…providers are on their own to figure out reimbursement codes.”

Indeed, we as psychosocial providers and caregiving scientists have been on our own to determine the most appropriate reimbursement codes to use, and in the process, have come across various challenges that require creative solutions that honor the unique burden of caregiving and increase access to available services for this vulnerable population. This editorial is one incremental step in response to the challenges highlighted by the National Alliance for Caregiving report, among others, to bridge the gap of care as we strive to increase the support services available for caregivers. Here, we highlight three interrelated challenges that psychosocial providers face in providing care to family caregivers and which our field needs to confront as healthcare transfers more responsibilities onto the shoulders of family caregivers: (1) caregiver burden is not recognized as a formal diagnosis; (2) current documentation for caregivers must be linked to patient encounters; and (3) support for family caregivers occurs within larger systematic barriers to mental health integration.

Challenge One: Caregiver burden is not recognized as a formal medical or mental health diagnosis

Diagnostic codes are defined by the International Classification of Diseases (ICD; now on version 10 maintained by the World Health Organization), the Diagnostic and Statistical Manual of Mental Disorders (DSM; now on version 5 maintained by the American Psychiatric Association) and, more recently, the Current Procedural Terminology (CPT) coding manual (maintained by the American Medical Association). ICD codes are much broader than the DSM (70,000 codes versus 300) but must be applied for insurance reimbursement. The current DSM-5 has over 300 mental disorders, defined as a significant disturbance in a person’s cognition, emotion, and behavior resulting in such impacts as distress, poor emotional regulation, impairment, dysfunction, and disability (American Psychiatric Association, 2013) and, currently, one of these diagnoses is needed to bill insurance for services rendered by a mental health professional. In addition to insurance reimbursement, diagnostic codes allow health care providers to effectively communicate and plan treatment.

While ICD codes and psychiatric diagnoses listed in the DSM-5 are meant to coincide, there remain significant gaps (First et al., 2021) which directly impede the integration of mental health providers into medical care more generally. For instance, the ICD-11 (approved in 2019) now lists several Z codes that are specific to caregivers, such as: Z63.79: Other stressful life events affecting family and household; Z71.89: Other specified counseling- Provision of support for self-management to caregiver; and Z73.3: Stress, not elsewhere classified: caregiver role strain. While these additions to the latest ICD may provide pathways for caregivers to receive additional services, mental health providers require corresponding DSM codes to bill insurance. Thus, in this regard, the DSM has not caught up to the broader medical communities’ acknowledgement of caregivers. Further, to our knowledge, none of the ICD codes explicitly define caregiver burden as its own diagnostic entity. This is striking, given discussions of a diagnostic category for caregiver burden long predate this editorial. In seminal early work (Northouse, Williams, Given, & McCorkle, 2012) the following is stated:

“Caregivers need to be assessed for caregiver burden, and its effects need to be documented. Ideally, an International Classification of Diseases (ICD) code for caregiver burden should be established… The ICD is used worldwide for morbidity and mortality statistics and for insurance payment. Use of a formal ICD code that diagnoses caregiver burden would allow reimbursement for primary care providers who evaluate and treat the caregiver. The code could also be used to help people secure a tax credit for their work as caregivers.”

These pioneers in caregiver research recognized the importance of diagnosing and documenting caregiver burden, both for increased reimbursement and to draw attention to caregiver burden on a public health level so that additional resources could be appropriately allocated.

Undoubtedly, the distress experienced by family caregivers is often profound, and frequently higher than that experienced by care recipients (Clavarino, Lowe, Carmont, & Balanda, 2002). Many family caregivers, including those without any history of mental health concerns, experience symptoms of anxiety, depression, and even posttraumatic stress that meet DSM-5 criteria for a major mood or anxiety disorder. For example, early work assessing psychiatric symptoms in family caregivers of patients with advanced cancer indicated that panic disorder was the most common identified psychiatric issue (Vanderwerker, Laff, Kadan-Lottick, McColl, & Prigerson, 2005). More recently, studies have shown that among cancer caregivers, 40-50% experience anxiety (del-Pino-Casado, Priego-Cubero, López-Martínez, & Orgeta, 2021; Götze et al., 2018; van Warmerdam et al., 2019) and 16-42% experience depression (Bedaso, Dejenu, & Duko, 2022; Cleveland Clinic, 2023; Family Caregiver Alliance, 2016; Geng et al., 2018; Goren, Gilloteau, Lees, & DaCosta Dibonaventura, 2014; Hudson et al., 2011; Nielsen, Neergaard, Jensen, Bro, & Guldin, 2016), and an increasing number experience posttraumatic stress symptomatology (Carmassi et al., 2020; Concierge Care Advisors, 2023; LaBuzetta, Rosand, & Vranceanu, 2019; Teixeira & Pereira, 2016; van Warmerdam et al., 2019).

Many caregivers, however, experience distress that is significant and even impairing but does not meet criteria for a major mood or anxiety disorder. Such distress is often labeled as caregiver burden, a multidimensional construct that refers to the ways in which the caregiver role and caregiving responsibilities can negatively impact the caregiver. Burden encompasses both objective and subjective factors (Given et al., 1992), including physical, psychological, social, emotional, and financial components, such as the responsibilities caregivers shoulder in assisting with ADLs and IADLs (Ge & Mordiffi, 2017). To our knowledge, however, there is no ICD or DSM-5 code for caregiver burden. This is particularly striking given that there are 21 ICD codes that document the performance of various caregiving-related tasks (World Health Organization, 2023), the performance of which are associated with caregiver burden (Ge & Mordiffi, 2017).

Importantly, while the drivers of burden may differ for caregivers based on their care partner’s illness, the experience of burden appears to be almost universal among family caregivers. For example, in dementia, neurocognitive, behavioral, and psychological challenges in patients are associated with greater caregiver burden (Chiao, Wu, & Hsiao, 2015). In other neurodegenerative diseases, such as amyotrophic lateral sclerosis, profound physical impairments remain the largest contributor to caregiver burden (de Wit et al., 2018). In cancer, greater need for help with activities of daily living for patients with solid tumors has been associated with greater burden (Ge & Mordiffi, 2017). Across diseases, when left untreated, burden increases significantly over time, is higher when more hours of care are provided (AARP National Alliance for Caregiving, 2020; Adelman, Tmanova, Delgado, Dion, & Lachs, 2014), and is higher for older caregivers (Unsar, Erol, & Ozdemir, 2021). Not surprisingly, higher burden is associated with increased symptoms of anxiety (del-Pino-Casado et al., 2021) and depression (del-Pino-Casado, Rodríguez Cardosa, López-Martínez, & Orgeta, 2019) across all disease types. This is one of the reasons early interventions for caregivers experiencing burden is so critical. Without a diagnostic code for caregiver burden, however, we are challenged to accurately describe and diagnose the experience of so many of the family caregivers seeking psychosocial support.

In this context, family caregivers are frequently given a diagnosis of an adjustment disorder in clinical practice. According to the DSM-5, an adjustment disorder includes the presence of emotional or behavioral symptoms in response to an identifiable stressor(s) occurring within three months of the onset of the stressor(s) that do not persist for more than an additional six months after the stressor is no longer present (American Psychiatric Association, 2013). Additionally, the DSM-5-TR states that the distress is out of proportion with the expected reaction to the stressor and/or the symptoms must be clinically significant. That is, they cause marked distress and impairment in functioning. Moreover, the DSM-5 states that, once the stressor is removed or the person has begun to adjust, the symptoms must subside within six months.

Despite adjustment disorders being commonly used in current clinical practice with caregivers, we question the helpfulness and appropriateness of this diagnosis, especially among the many caregivers whose symptoms persist for months and even years but do not increase in intensity to meet DSM-5 criteria for a major mood disorder. First, it is rare for caregivers to seek and ultimately receive psychosocial support within the first three months after their care partner’s diagnosis. Moreover, rarely is the stressor removed during the course of care; instead, the stressor–family caregiving–remains constant and often intensifies over time. For so many caregivers, the stressor is present for years and even decades, and the stress endures and remains impairing as the challenges of illness and caregiving ebb and flow (Corey & McCurry, 2018; Kim & Schulz, 2008; Oshio, 2015). During this time, many caregivers continue to experience distress that is no longer accurately described by the label of adjustment disorder, but too, does not meet criteria for a major mood disorder. Perhaps not surprisingly then, the diagnosis of adjustment disorder has been criticized for inaccurately describing more chronic conditions lasting longer than the 6-month timeframe (Bachem & Casey, 2018; O’Donnell et al., 2016); Additionally, compared to other psychiatric diagnoses, mental health care usage is particularly low for patients diagnosed with adjustment disorders (Maercker et al., 2008), raising further questions about its clinical utility.

What, then, is the appropriate diagnosis for the large number of family caregivers whose distress endures for years, for whom the stressor of caregiving is never removed during a course of psychosocial care, and whose symptoms do not warrant a diagnosis of major depression or generalized anxiety but nonetheless are distressing and periodically impairing? Would the potential benefits of the creation of a diagnostic and billing code for caregiver burden warrant further exploration? Defining caregiver burden as a billable, clinical condition would allow for more meaningful communication among healthcare professionals accessing caregivers’ medical records, and likely mitigate the stigma that so many caregivers feel when receiving a diagnosis of a mood disorder, a further barrier to care (Dockery et al., 2015; Mosher, Given, & Ostroff, 2015). Moreover, a diagnostic category and billing code for caregiver burden would allow for improved healthcare communication, and more precise characterization of the psychosocial experience of caregivers nationally. From a public health standpoint, we remain severely limited in tracking the epidemiology of caregiver burden and in the absence of specified diagnostic and billing codes that would allow us to fully define the scope of the problem, we remain challenged to track caregiver burden as a public health issue and effectively advocate for services for caregivers. Reliance on adjustment disorders to describe their lived experience does a disservice to caregivers and conveys limited meaningful data to other healthcare providers involved in their care. While some new Z codes in the latest ICD-11 have begun to recognize caregiver strain more generally, these alone do not provide a pathway to increase mental health care access. Without a mechanism to consistently document and bill for caregiver burden, providers are disincentivized to turn their attention to caregivers during clinical encounters. When caregiver burden is better characterized and subsequently documented, however, healthcare providers can more effectively communicate and intervene on the profound needs of this vulnerable population.

Challenge Two: Current documentation for caregivers must be linked to patient encounters.

It is our hope that all family caregivers will be able to access support that is targeted to their own unique needs and in which they, as caregivers, become the identified patient with their own medical record (Applebaum et al., 2021). This would, in turn, allow access to mental health services offered through their insurance carriers. To date, however, it remains common for caregiver support to be superimposed upon psychosocial care delivered to patients. In the original white paper that inspired this editorial (National Alliance for Caregiving, 2021), the authors presented a comprehensive list of 44 categories of “Patient-Targeted Caregiver Services,” “Caregiver Targeted Services,” and “Category II” codes. While these represent creative approaches to acknowledging caregivers’ contributions to patient care, this expansion of billing codes that include caregivers puts the ownness on the provider to dissect and appropriately apply countless codes. This further complicates billing and adds to the fragmentation of physical and mental health care (Bachrach, Anthony, Detty, Manatt, & Phillips, 2014; Lombardi, Greeno, & de Saxe Zerden, 2023; Mauch, Kautz, & Smith, 2008). The utility of these codes is also limited since the majority require a physician to issue the bill and exclude behavioral health clinicians. Finally, because these codes are limited to describing how caregivers interface (or interfere) with patient care, they have the potential to be highly pejorative. Imagine an overly burdened caregiver receiving an additional charge to their insurance because their stress interfered with the care they were trying to deliver to their family member or loved one. To our knowledge, the only code listed in this NAC Appendix that provides direct, reimbursable support to caregivers is the traditional psychotherapy code (90832-90837), which requires a psychiatric diagnosis, returning us to the barriers highlighted in Challenge One.

Challenge Three: Support for family caregivers occurs within larger systematic barriers to mental health integration.

Advocating for increased access to mental health care for this vulnerable population must take the larger healthcare system into context. More than one fifth of the U.S. population had a mental illness in 2020 (Substance Abuse and Mental Health Services Administration, 2021), a 30% increase from 2008 (Substance Abuse and Mental Health Services Administration, 2020). While the Mental Health Parity Act of 1996 and the Affordable Care Act of 2010 sought to create equal reimbursement for physical and mental health care, mental health care coverage still lags behind the rest of medicine in both reimbursement rates and access to providers for the general population (O’Donnell, Williams, & Kilbourne, 2013). The COVID-19 pandemic further highlighted the mental health crisis in the U.S. (Adams-Prassl, Boneva, Golin, & Rauh, 2022) and while it expanded the use of mental health telehealth services (Mulvaney-Day, Dean, Miller, & Camacho-Cook, 2022), data suggests that these services are limited by the same low reimbursement rates highlighted above (Wilson, Rampa, Trout, & Stimpson, 2017). Stigma also remains a significant barrier to expanding mental health care services (Substance Abuse and Mental Health Services Administration, 2013), and caregivers are no different, expressing negative perceptions of mental health professionals and the desire to manage emotional concerns on their own (Mosher et al., 2015). As a result of these and other factors, nearly one third of patients with psychiatric diagnoses do not receive treatment (Substance Abuse and Mental Health Services Administration, 2015).

Despite these barriers, with the momentum to increase available support to caregivers, there are several emerging, alternative billing pathways that deserve attention. First, Health and Behavior Codes that are added onto existing medical codes (O’Reilly, 2019) allow mental health providers to bill for behavioral health services without a corresponding psychiatric diagnosis. Theoretically, these codes create a pathway to bill caregivers’ insurance for their own care while skirting the need to document a diagnostic code for caregiver burden. Unfortunately, while there was significant enthusiasm when these codes were originally approved (Drotar, 2012), their low reimbursement rates, need for additional preauthorization, and higher rates of insurance denial (Duke, Guion, Freeman, Wilson, & Harris, 2012; Patel, Apple, & Campbell, 2021) are significant barriers to their integration. Second, direct payment for caregivers’ management of home-based care may represent an alternative pathway to reimburse caregivers for the care they provide for patients and possibly may be applied toward their own mental health care. For instance, out of the 28 states who have presented their initial plan in response to The American Rescue Plan Act (National Academy for State Health Policy, 2021), three directly cite mental health care access as priorities and plans to apply these federal funds to improve caregiver mental health. More recently, the Centers for Medicare and Medicaid Services (CNS) recently released GUIDE (Guiding an Improved Dementia Experience) Model represents one exemplar program that will provide mechanisms for caregivers to receive education, training, and support for families covered by Medicare Part B. The extension of this model to support caregivers of patients with a wide variety of illnesses and conditions will be an important future direction. However, these benefits appear to be directly linked to patient’s care and, therefore, medical record, further emphasizing the barriers described in Challenge Two above. Finally, the National Strategy put forth by the Administration for Community Living and the RAISE Family Caregiving Advisory Council in 2022 outlined five goals to improve the quality of life of family caregivers. The future realization of Goal 3 of the National Strategy – strengthen services and supports for family caregivers – will mean that caregivers nationally will have access to psychosocial support that will not contribute to further financial burden. Together, while these programs represent positive momentum to deliver support to caregivers, and we are in a pivotal moment in addressing caregiver burden, as of today, none provide a clear and direct pathway for mental health providers to deliver such services to caregivers in need.

Conclusions

Caregivers provide an incredible amount of unpaid – and often underrecognized – assistance in the delivery of cancer care. These efforts, however, come at profoundly high cost and put them at risk for significant mental health challenges. Without support, such challenges can become severe and impair caregivers’ capacities to provide high quality care to patients. Indeed, addressing caregiver burden will take creative solutions. We have argued that establishing caregiver burden as a diagnostic category has the potential to increase access to appropriate, equitable mental health care for caregivers of patients facing serious illness and that current models of healthcare delivery remain exclusively patient focused and exist in the context of existing challenges with mental health care integration more broadly. As we have argued, circuitous pathways to billing for caregiver burden that remain tied to patients’ records, and thereby their insurance, do not provide pathways for direct support for caregivers. We have proposed that considering caregiver burden as a distinct clinical group of symptoms would address these issues. If codified, the diagnosis would allow for more accurate documentation and billing of caregiver burden and, hopefully, will allow for the most impactful realization of the National Strategy to Support Family Caregivers.