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Miles G. Taylor, Amélie Quesnel-Vallée, The Structural Burden of Caregiving: Shared Challenges in the United States and Canada, The Gerontologist, Volume 57, Issue 1, 1 February 2017, Pages 19–25, https://doi.org/10.1093/geront/gnw102
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Abstract
In contrasting health care structures, we each served as caregivers to elderly parents where a shared and unexpected theme in our experiences was the substantial burden of negotiating and managing long-term care (LTC) services within our respective health and social care systems. In this article, we introduce and elucidate an under recognized source of caregiver burden in the United States and Canada: the structural burden of caregiving. We draw on shared and unique experiences cross-nationally, along with the literature, to illustrate that (a) today’s caregiving is increasingly characterized by interactions with formal health and social systems in negotiating and managing services, (b) these systems are hampered by discontinuous and fragmented care which increase caregiver stress, and (c) this structural burden likely exacerbates inequity for both care recipients and caregivers. In conclusion, we call for theoretical models of caregiving to highlight health and social systems as creating burden and for measurement of caregiver burden to explicitly consider the time and stress stemming from interactions with formal health and social systems. Finally, we call for future policy evaluation to incorporate structural burden as an additional outcome in considering changes to LTC provisions and funding.
A hallmark of the past century in wealthy countries has been unprecedented population aging and its consequences. The proportion of those aged 65 and older is projected to reach roughly 20% within 15 years in both the United States and Canada (Ortman, Velkoff, & Hogan, 2014; Statistics Canada, 2015). Furthermore, functional gains among older adults observed in previous decades have resulted substantially from increased medical care (Parker & Thorslund, 2007), whereas current projections suggest that the health of older individuals is stabilizing and may decrease (Hagen, 2013). These trends underlie projections of long-term care (LTC) needs doubling between 2000 and 2040 (Allen, 2005).
In contrast, the pool of potential informal caregivers and/or their time has been decreasing (Fast 2015; Pavalko, 2011). Smaller family sizes, women’s involvement in the labor force, divorce/separation, and geographic mobility all suggest fewer available caregivers. This disjunction between a larger population in need of more care and a smaller pool of caregivers yields what Pavalko (2011) refers to as a “caregiver squeeze.”
Together these trends suggest a number of changes for older adult care in coming decades. First, LTC needs are substantially increasing (Allen, 2005). Second, this care is increasingly marked by interaction with the formal health care system, as chronic disease and the related need for medical care, rehabilitation, and assistive technologies increases (Parker & Thorslund, 2007). Third, today’s informal care network is “squeezed,” such that care is increasingly expected to shift to the formal care system (Guberman, Lavoie, Blein, & Olazabal, 2012).
In this paper, we draw from our own experiences as caregivers to argue for the inclusion of a new dimension of caregiver burden that arises from managing complex interactions with the fragmented structures of formal health and social care systems. Although literatures in health care systems include these structures as factors impacting health care spending and utilization, there is currently no clear discussion in the overarching caregiving literature on how these systems contribute to caregiving burden. Although we were well learned in the LTC and caregiving literatures, neither of us anticipated the toll this structural burden would take when we embarked on our caregiving trajectories. Furthermore, the fact that we experienced remarkably similar challenges in Canada and the United States, and for care recipients with very different needs, is suggestive of the pervasive but under recognized nature of this caregiving burden.
Thus, we argue the structures of our North American LTC systems (and likely beyond), generate their own demands and stressors for today’s caregivers, and that these are not adequately addressed in theory or measurement of caregiver burden at either the macro (structure) or micro (individual) levels. We restrict our use of the term “structure” to the health/social care and national payment systems involved in LTC, as these were the themes in our experiences that emerged as surprisingly onerous and lacking in current research.
In what follows, we briefly outline key concepts related to the caregiving burden literature. Next, we present the general timelines of our caregiving experiences in cross-national context (the United States and Canada). Although these are fundamentally different care systems, important similarities exist in the provision of LTC giving rise to a number of shared themes in our experiences. We draw from these to illustrate the concept of the structural burden of caregiving. Throughout this narrative, our unique cross-national perspective illuminates where structural burden is likely shared across contexts and where it may be uniquely challenging in the United States (i.e., regarding cost of care and eligibility for public coverage).
We note that before the 3-year period of active caregiving where caregiving burden was most acute, our recipients required “only” supported self-care and disease management which was still characterized by structural burden. During this time, our recipients’ health and functioning was similar to a substantial segment of the older and/or chronically ill population. We argue that this group will likely grow with increasing survival at older ages, and thus the structural burden of caregiving will become more common in both active and passive caregiving roles.
Caregiving Burden
Informal caregivers are commonly defined as individuals providing unpaid personal care assistance to a family member or loved one due to health-related impairment. Estimates suggest that 18.2% of American and 28% of Canadian adults report caregiving (Fast, 2015; U.S. Bureau of Labor Statistics, 2015). Although caregiving may also lead to positive feelings, the literature generally suggests that caregiving is associated with worse physical and mental health (Schulz & Sherwood, 2008).
Current literature assumes that the stress associated with caregiving burden results from an unbalance between caregiving demands and the caregiver’s available time and resources (Pavalko, 2011; Savundranayagam, Montgomery, & Kosloski, 2011) or a discrepancy between caregiving demands and the caregiver identity (Montgomery & Kosloski, 2009). Although not incongruent with our experiences, the assumption that caregiving demands arise largely from the personal provision of tasks directly related to the recipients’ daily needs could not fully account for the burden we felt. As aging and health scholars, we see burden as arising from the experience of life stressors, relationships, and the mesolevel structures clearly identified in the caregiving literature (work and families) (Pavalko, 2011; Savundranayagam et al., 2011). However, as sociologists, we also see it as impacted by larger macrostructural forces, and increasingly by formal health and social care systems. We argue that a substantial and increasing proportion of caregiver stress, and thus burden, arises from managing and negotiating services for recipients within these systems. Further, the nature of these structural systems, even cross-nationally, shapes the experience of today’s caregiving.
We should note that some literature does incorporate structural forces and health care settings in understanding caregiving burden. Quadagno (2015) has highlighted caregiving burden stemming from negotiating Medicare and Medicaid. Similarly, literature on inpatient and palliative care (Kane and West, 2005; Penrod, Baney, Loeb, McGhan, & Shipley, 2012) and testimonies in the public media (e.g., Butler, 2015; Casarett, 2015; Faces of Health Care, 2016) have documented caregiving challenges related to health systems organization. We take these as highlighting an emerging theme in caregiving research that has not yet received much systematic attention. We aim here to demonstrate that structural factors existing in both the Canadian and U.S. LTC systems are at the root of the structural burden we —and likely countless others—experienced. And we argue here that this burden ought to be more formally recognized, through further research and actions to address it. In the next section, we briefly share key characteristics of our respective caregiving trajectories to set the context for common emerging themes.
Caregiving Trajectories in Comparative Perspective
Although they arose from very different care recipient needs, our caregiving trajectories share remarkable similarities. After years of passive caregiving, we both became active caregivers as a result of acute care events in 2011/2012 that marked the onset of sharp downward trajectories of functional decline, punctuated by periods of remission, eventually leading to the death of the care recipients in 2014/2015. Both of our experiences included multiple forms of care provision (instrumental help with daily needs, cognitive and emotional support, and health and social care management) across multiple care settings (in-home, group residence and inpatient, formal and informal, and paid by the government and out-of-pocket). We should note that both of our experiences occurred in urban environments and we were financially advantaged compared with many caregivers, therefore our access to health care infrastructure and formal services was high. Figure 1 depicts our respective timelines of caregiving, with differentiation by the care setting/provider (by row) and also the intensity (color) of the care provision/caregiver response.
In Canada (Montreal, QC), Lise (Amélie’s mother) was 53 years old when she was diagnosed in 1997 with very severe chronic obstructive pulmonary disease (COPD) and recognized as medically disabled at 58 years of age. During 17 years of disease progression, Lise experienced repeated acute hospitalizations followed by inpatient rehabilitation facility stays. Despite the severity of her condition, Lise remained at home thanks to an intergenerational household established in 2006, as well as publicly subsidized assistive technologies (e.g., elevator chairs and home oxygen) and formal home care and nursing support starting in 2007. It was not until a hospitalization for severe bilateral pneumonia left her unable to return safely home in October 2014 that she entered a public LTC facility where she ultimately received palliative care prior to her death in December 2014, at the age of 70 years.
In the United States (Jacksonville, FL), Betty (Miles’s grandmother/parent) aged “successfully” with multiple chronic diseases but few impairments. Even after a heart attack in her late 80s, she lived independently with limited out-of-town help from family, minimal in-town help from friends, and privately paid services until 2011. At the age of 96 years, a compression fracture set off a trajectory of substantially decreased mobility. After this hospitalization, she lived with Miles as a full-time care recipient before a short stay in a private pay assisted living facility (ALF), ultimately returning home. The following year was characterized by an extensive system of informal (friends/family) and privately paid services, coordinated by Miles from out of town. After repeated falls, she moved in 2013 to a subsidized ALF near her home, where the last 2 years of her life were punctuated by acute hospital and rehabilitation stays. Her last hospitalization resulted in a short inpatient Hospice stay before her death in June 2015.
As we experienced caregiving in parallel and shared common experiences, we realized these may be rooted in structural similarities. The United States and Canada may be differentiated as entrepreneurial and national health care systems, respectively, but coverage of old age and LTC services reveals important commonalities, as argued previously (Quesnel-Vallée, Farrah, & Jenkins, 2011). The health care system evolution in both contexts suggests that although they differ in the number of payers (public/private) and coverage (who and what gets covered), they both originated before aging populations became policy concerns. Moreover, both systems are notoriously hospital- and physician- centered. Accordingly, public funding for LTC centers on health, rather than social concerns, in contrast with many European countries. Thus, in the United States, Medicare covers very little in-home LTC services, primarily short-term nursing home and rehabilitation stays following acute hospital stays. Instead, Medicaid becomes a substantial payer for LTC, where service coverage is variable by state and the eligibility threshold is often low. Although a broader basket of LTC services is covered on average in Canada, coverage also varies substantially between and within provinces. Assistance requests must be made and are granted by local health authorities on a per-case basis. Therefore, coverage of in-home LTC in Canada is also limited and variable. Finally, where services are covered (in both contexts), they are often centered in silos of care (e.g., home, inpatient rehabilitation and/or LTC facility, hospital) without coordination across care settings. Given this fragmentation, it is not surprising that caregiver burden would increase at multiple stages of the caregiving career when faced with accessing, coordinating, and managing medical and social care in both contexts.
Shared Themes: Eliciting the Structural Burden of Caregiving
Arising from our experiences are a number of shared themes. First, we found that today’s caregiving is uniquely characterized by time interacting with health and social care systems in negotiating and managing care and services. Further, the burden of this interaction often goes unrecognized beyond traditional concepts of caregiving even though it may constitute a nontrivial portion of caregiver burden. In fact, the fairly generous public home support for her mother’s personal/daily care led to Amélie not recognizing herself as a caregiver until relatively late, suggesting that management care may influence the development of caregiver identity, its timing, and incongruence with other roles (Montgomery and Kosloski, 2009). Together, we found that a substantial portion of our caregiving time and stress (between 15 and 50%, depending on the caregiving phase, as per Figure 1) was spent negotiating and managing services. This included discussion, coordination and even advocacy and negotiation with inpatient, outpatient, and home care providers; managing medication and treatment (especially during transitions between care settings); and discussion with case managers (United States) and social workers (Canada) regarding care planning.
Overall trends in Western contexts support our observations, as historical shifts toward curative treatment have meant growth in formal care and interventions (Grabowski, 2008). Increasing multimorbidity in today’s populations (Koné Pefoyo et al., 2015; Uijen & van de Lisdonk, 2008) also suggests that complex patients are surviving thanks to increased health treatments requiring management by both the formal (e.g., case managers) and informal (e.g., caregivers) sectors. Finally, increasing LTC needs coincide with health care structures primarily suited to acute needs, such that care management of the chronically ill becomes more onerous. The additional burden of a system where relatively few LTC services are consistently covered prior to advanced stages of frailty (i.e., nursing home/LTC facility/palliative care) means additional time and stress compared with health care systems with more continuous, patient-oriented care.
Accordingly, a recent report in the United States (National Alliance for Caregiving (NAC) and AARP, 2015) suggests that the majority of today’s caregivers report actively monitoring the health of their recipient, communicating with health care providers, and advocating on the recipient’s behalf. This management care increases with the demands and complexity of the recipients’ conditions (ibid.). Although a majority of caregivers report this type of care, there is to our knowledge no literature capturing how much time and stress it constitutes, whether caregivers “count” this care in estimates of burden, or how this type of care influences the caregiving identity (Montgomery and Kosloski, 2009). It is likely that the structural burden of care, because it is entrenched in health care and old age support systems, goes systematically underrepresented in estimated caregiver burden.
The second theme emerging consistently in our experiences was that caregivers interact with health care systems characterized by both discontinuous and fragmented care, which add to stress in obtaining and maintaining care and services. The discontinuity arises from the separation of LTC needs as either medical or social as determined by payers/providers, a dichotomy now seen as inappropriate (Gaugler, 2016). In our respective systems, we both experienced high levels of discontinuity in services, case management, and knowledge about the patient or plan of care across care settings and providers. Further, with both our systems being hospital centered, the point of entry into most medical—and social!—services unfortunately still remains an inpatient hospital stay. To be clear, we never felt that our care recipients experienced unmet needs due to lack of access to formal services (as it would be in rural or disadvantaged environments). Rather, the burden arose from the discontinuous and fragmented nature of available services.
In the United States, Medicare generally requires a 3-day stay before nursing home or rehabilitation services are covered, therefore scant access to services usually centers not around a diagnosed condition, but from hospital admissions coded as “inpatient.” Miles learned this when her grandmother was hospitalized after a compression fracture resulted in a fall. After 2 days in the hospital, the case manager noted that Betty was coded as “observation” rather than “inpatient,” and therefore Medicare would not cover inpatient rehabilitation. Neither the physician nor the case manager could guarantee status change, so Miles chose to bring Betty home with her for in-home rehabilitation services which would be covered, in a city hours away. Although Betty could barely walk upon discharge, the in-home services were a fraction of those in an inpatient rehabilitation center (1–2 hours of therapy per week compared with per day). The in-home care also lacked pain management or monitoring for falls, so Miles had to provide full-time care. After weeks without progress, the home health nurse was able to get Betty admitted to an inpatient facility where her medication and mobility were monitored, and she regained a substantial amount of functioning. These vague eligibility criteria coupled with scarce coverage contributed to substantial added burden for Betty and Miles in this process, not least because failure to accurately negotiate services would mean reduced functional recovery and/or tens of thousands of dollars in out-of-pocket costs.
In Quebec, eligibility for LTC social services is typically established through physician assessment. Amélie was “lucky” that her mother was treated for COPD in a tertiary care institution specializing in pulmonary diseases. This resulted in integrated care trajectories, where each health event resulting in hospitalization (roughly two per year) was followed by an inpatient 3-week pulmonary rehabilitation program. During one such stay in 2011, Lise was assessed as eligible for inpatient LTC. Although Lise refused to be placed on the waiting list at the time, this assessment qualified her for public home services with case management by a social worker. Although this resulted in a rather fluid trajectory into long-term (home) care provision, it is important to note that it stemmed more from the excellent COPD care management within this specific institution than from a truly integrated public system. This signals that even in Quebec, patients like Betty, who do not have a pre-existing diagnosis with clear management guidelines and/or who live in areas without such specialty services, are very likely to experience periods of high uncertainty and multiple disruptive transitions in navigating the fragmented silos of the health and social care systems.
These examples also highlight one divergent experience we had surrounding financing of care and navigating eligibility for public coverage. In the United States, Miles experienced the added burden of determining whether and/or under which circumstances services were covered under Medicare and negotiating access to home health, rehabilitative, and institutionalized care resources before Betty could qualify for Medicaid. Betty’s resulting LTC profile was a cobbled together system of informal (family/friends) and out-of-pocket paid support keeping Betty in her home as long as possible. All of these “pieces” had to be coordinated, because there was no eligibility for covered formal services or a case manager. Similar to Amélie, Miles failed to consider herself a caregiver until Betty needed full-time personal care, as she did not count the time and burden of coordination or management care as tangible caregiving.
In contrast, in Canada, although Lise incurred substantial out-of-pocket expenses for room and board while in the public LTC facility (hospital/physician services are covered), they were anticipated, and followed straightforward, widely available guidelines established on the basis of room types and a sliding income/asset scale. This highlights the importance of fluid, transparent program information in lessening caregiver burden. From these experiences, we took away the fact that beyond having to pay for care out-of-pocket (already a potential stressor), an additional stressor was imposed by the complex eligibility rules for public coverage in the United States. Here, program parsimony and transparency made a world of difference in our experiences.
The third and final theme arising from our experiences was the realization that the structural burden of care, although shaped by systems purported to be universal, likely exacerbates inequity for both caregivers and recipients. We have noted the substantial amount of caregiving burden arising from health care structures and management/negotiation of services. However, we must also acknowledge that we were uniquely privileged as highly educated professionals with substantial financial resources enabled to access formal services and “engage” in management care. Furthermore, we conduct research in gerontology and health care systems, which provided us the human capital and knowledge base to seek out, access, and coordinate care and services. Our backgrounds also likely provided us with “cultural health capital” in interactions with health care and case management professionals (Shim, 2010) which increased chances of successfully navigating our systems. We interacted as equals and sometimes even experts with health professionals and social workers/case managers, and were recognized as such. For instance, as her mother was treated in her University’s hospital network, Amélie’s associate professor position led her mother’s treating physicians to address Amélie as a colleague and peer. Likewise, Miles encountered marked shifts in provider interactions once her expertise in older adult health and functioning became clear, especially among physicians. For both of us, this ultimately led to less invasive and defensive medical practices as our care recipients approached the end of their lives.
On the whole, we surmise that our knowledge of the system and the ability to effectively interact with care providers reduced our time managing formal care. Further, we suspect that the stress associated with structural burden was lessened for us for a number of reasons, among them the early planning we undertook which was informed by our expertise in LTC and disablement processes, our financial capacity to supplement costs, and the ability to seek out health and service information from professionals in our social networks (colleagues, friends, and family) when needed. Miles, for example, enlisted an elder lawyer in 2007 and consulted numerous health care professionals in her family throughout Betty’s progression about her plan of care and Medicare coverage. Throughout both of our experiences, we repeatedly wondered what the process would be like if we were not uniquely privileged by such social position and professional knowledge.
There are a number of ways in which the structural burden of care may promote inequity for caregivers and recipients, and these are tied to our previous themes. First, greater financial resources ensure formal LTC provisions may be accessed from private markets, especially in the United States. These resources may also reduce overall caregiver burden as many paid services include case management across care settings. In fact, we would argue that the growth of the “elder care/case manager” profession in the United States is testament to the reality of structural burden and marks the divide between those able and unable to afford formal management care (Kane & West, 2005). Second, lack of integration within systems of government paid LTC services suggests that access to these services is strongly tied to the knowledge, advocacy, and negotiation abilities of informal caregivers.
Our experiences illustrate that, even in universal public systems, inequalities arise when socially privileged groups are able to command a disproportionate share of scarce public resources; because of knowledge, power, or other valued social assets. To wit, Amélie was able to obtain a subsidized LTC bed for her mother by referring to a specific program by name, which she knew of from her research. This is a patent example that inequities in both private and publicly paid formal services are likely shaped by caregiver characteristics over and above those of recipients. Indeed, scholars have increasingly noted the context of health care provider interactions as mechanisms fueling disparities in health (Penrod et al., 2012; Shim, 2010). This means that disadvantaged caregivers may spend more time and energy educating themselves and providers on patient needs and advocating for care recipients. And even then desired outcomes are less assured. Had Amélie not known about this LTC hospital discharge program, her mother would have been discharged at home (as per the hospital’s plan) where Amélie would likely have had to engage in full-time caregiving.
Conclusions
We have introduced and elucidated the concept of the structural burden of caregiving as the portion of caregiving burden stemming from the interaction with formal health and social care systems. We focused primarily on LTC, because this type of caregiving coincided with our own experiences and showcases how health care systems in multiple contexts contribute to caregiving time and stress. Although our urban settings and high access to care make our experiences less generalizable to rural and disadvantaged caregivers, we argue that the challenges of care access and management in rural settings would likely exacerbate structural burden as caregiver stress may increase as access to care decreases (see Faces of Health Care, 2016).
In concluding, we call for more research to document this source of burden, in order to achieve the following objectives:
(1) Develop theoretical models of caregiving to highlight health and social care structures as producing caregiver burden across caregiving careers (in addition to literatures focused on care recipient/caregiver characteristics, paid work, and family).
(2) Validate attendant definitions and measures of caregiving burden (time and stress) that explicitly take into account interactions with formal health care and social service systems to obtain and manage services.
(3) Incorporate these research innovations in tools allowing for the assessment of deficiencies in social support (to support self-care or disease management) or self-care skills or disease management strategies (for patients and/or caregivers).
Thus, this call for research action is situated in a broader movement seeking to improve the support of caregivers and recognize them as “both co-provider and co-recipient of care” (Penrod et al. 2012, p. 12). As we have shown, this type of burden is likely to increase among future caregivers who rely on formal systems (both public and private) to provide and supplement medical and personal care for their loved ones. We have also argued that the structural burden of care is one mechanism by which inequalities in health and access to care are likely perpetuated for older adults and their caregivers.
We have elaborated these themes in a cross-national perspective to show where our own experiences typify the commonalities and differences of two North American health and social care systems in contributing to structural burden. The LTC literature refers broadly to negative implications for older adults and their families shaped by these systems, but little has changed in LTC policy over several decades to comprehensively increase coverage and/or decrease burden. Although scholars have criticized both the U.S. and Canadian LTC systems, local experimental integrated care programs have not been generalized into the larger policy or health care structure in either context, despite evidence of effectiveness for utilization and patient well-being (Gaugler, 2016; Shapiro & Taylor, 2002). At the very least, systems focused on the patient (rather than institutional silos) and aimed at ensuring continuity of the care trajectory would go a long way in decreasing the structural burden of caregiving, with substantial associated externalities for patients, caregivers, and even society at large. Thus, we also argue that the impact evaluation of LTC reforms should seek to explicitly model structural burden in addition to more traditional measures of caregiving to ensure that this reality is acknowledged and acted upon.
Funding
A. M. Quesnel-Vallée was supported by the Canada Research Chairs Program, as Canada Research Chair in Policies and Health Inequalities. This research was supported by a grant from the Social Sciences and Humanities Research Council of Canada (435-2016-1461; PI: A. M. Quesnel-Vallée).
Acknowledgments
The authors contributed equally to the study. The authors thank Jill Quadagno and Larry Polivka for suggestions and comments on previous drafts of this paper. They also thank the anonymous reviewers for their thoughtful suggestions which have significantly improved the manuscript. All errors and omissions remain our own.
References
Author notes
*Address correspondence to Miles G. Taylor, PhD, Pepper Institute for Aging and Public Policy, Department of Sociology, Florida State University, 633 West Call Street, Tallahassee, FL 32306. E-mail: mtaylor3@fsu.edu
Decision Editor: Nicholas G. Castle, PhD