Introduction
Informal caregivers – including spouses, family, friends, and neighbors – play a crucial role in supporting the health, well-being, functional independence, and quality of life of older persons. A growing body of evidence suggests that in addition to providing a range of instrumental and emotional supports, informal caregivers often serve as the main interface with the formal care system, accessing and coordinating services on behalf of older persons who cannot manage on their own (Hollander, Liu, & Chappell, Reference Hollander, Liu and Chappell2009; Neumann, Crewe, Clow, & Amaratunga, Reference Neumann, Crewe, Clow and Amaratunga2007; Williams, Peckham, Rudoler, Watkins, & Tam, Reference Williams, Peckham, Rudoler, Watkins and Tam2013a).
In addition, informal caregivers are widely seen to contribute to the sustainability of formal care systems. It has been estimated that caregivers provide 70 per cent to 90 per cent of care for older persons and that a possible decline in informal caregiving – due to factors such as increased childlessness, decreasing family size, and the increasing participation of women in the paid labour force – could increase formal system costs by 5 per cent to 35 per cent (Canadian Institute for Health Information [CIHI], 2010; Organization for Economic Co-operation and Development [OECD], 2010).
However, such benefits may come at a cost (Change Foundation, 2011; Chou, Reference Chou2000; Grant et al., Reference Grant, Amaratunga, Armstrong, Boscoe, Pederson and Willson2004; Keefe, Reference Keefe2011). Caregiving, particularly when intensive and sustained, can limit social engagement and paid labour force participation. It can also increase the risk of physical and mental health problems such as depression (Keefe, Reference Keefe2011; OECD, 2010). The number of caregivers affected is potentially high: according to a recent study, 27 per cent of Ontario families provided ongoing care for over two years, spending, on average, 20 hours a week (Brown, Reference Brown2009). As a result, policy makers in most industrialized countries are introducing a range of measures aimed at supporting informal caregivers with the intention of reducing informal caregiver stress and burnout, and increasing informal caregiver resilience and capacity to provide care (OECD, 2011; Rajnovich, Keefe, & Fast, Reference Rajnovich, Keefe and Fast2005).
In this article, we analyze findings from a study we conducted of community-based care options for older persons waiting for residential long-term care (LTC) in one region of Ontario, Canada, to examine how professional case managers from across the care continuum perceive and attempt to balance informal and formal care in their day-to-day work. Along with caregivers, case managers define the interface between informal and formal care systems; they are the first line of contact for care recipients and caregivers within the formal care system. Moreover, case managers exercise considerable authoritative control over the allocation of available home care resources; their judgements heavily impact on what formal supports older persons and their caregivers receive. However, case managers’ judgements are not well-documented, and in jurisdictions such as Ontario, few protocol benchmarks or best practices are available to guide care decisions for caregivers. Indeed, while current home care legislation and regulations specify what care recipients can receive, relatively little attention has been paid to informal caregivers, even as to whether they should be considered “clients” in their own right or whether they are defined, in effect, by their relationship to the care recipient. Better understanding of the logic of case managers’ decisions concerning care for caregivers thus promises important insights not only into how home care resources are currently allocated but also as to what principles might be used to guide caregiver support initiatives in the future.
In this article, we present a brief overview of the policy context in Ontario and different approaches to conceptualizing the balance of informal and formal care. We then detail how we used mixed methods to examine case managers’ perspectives in one region of Ontario on how best to support caregivers to older persons at different levels of assessed need. We conclude by reflecting on key dilemmas faced by case managers and policy makers: although decision makers are increasingly aware of informal caregivers’ crucial role, and the need to support that role both to sustain caregivers and moderate demand for more costly formal services, it is not self-evident what supports work best, and under what conditions, for caregivers as well as care systems. As a result, home care resource allocation decisions made on the front lines are made with little guidance; while decisions allow scope for innovation and flexibility, there is also room for ineffective or inequitable allocation decisions (Williams, Spalding, Deber, & McKeever, Reference Williams, Spalding, Deber and McKeever2005) rooted as much in power imbalances and caregiver personal characteristics (including age, sex, ethnicity) as in evidence and best practices.
Context
Ontario, like other industrialized jurisdictions, faces the converging pressures of an aging population and rising health care costs. The Organization for Economic Co-operation and Development (OECD) estimates that the proportion of those aged 80 and older in the OECD nations, including Canada, will more than double from 4 per cent in 2010 to over 9 per cent by 2050 (OECD, 2010). This is significant both because those over age 80 are among the most intensive users of costly health care services and because the pool of younger caregivers correspondingly shrinks. As noted, predicted outcomes include growing demands on already stretched health care systems, potentially eroding access and sustainability (Drummond & Burleton, Reference Drummond and Burleton2010; Ettner, Reference Ettner1994; Evans, Reference Evans2010).
In Ontario, ongoing policy shifts over the past two decades have complicated such trends. Initiatives aimed at reducing the number of hospital beds and lengths of in-patient hospital stays have increased demand for outpatient and community-based care (Keefe, Reference Keefe2011; Williams et al., Reference Williams, Challis, Deber, Watkins, Kuluski and Lum2009a, Reference Williams, Kuluski, Watkins, Montgomery, Lum and Ying2009b). Moreover, as pressures have mounted to discharge hospital patients “quicker and sicker”, greater proportions of available home care resources have been directed towards post-acute-care patients, with consequently fewer resources available for prevention and maintenance (Health Council of Canada, 2012; Ontario Association of Community Care Access Centres, 2007). In 2007, Ontario introduced a 4-year, $1.1 billion Aging at Home (AAH) strategy aimed at supporting older persons in their own homes and communities; however, in 2009 it subsequently redirected AAH resources towards reducing the number of hospital “alternative level of care” (ALC) beds occupied by so-called “bed blockers”: individuals no longer requiring acute care who cannot be discharged because of a lack of community supports (LHIN, 2006; Central East Local Health Integration Network [LHIN], 2010; CIHI, 2010). Although the impacts of these and related policy shifts have not been systematically evaluated, they suggest more-complex and rising demands on informal caregivers, in turn contributing to potentially rising levels of distress and the risk of caregiver burnout and withdrawal (CIHI, 2010; OECD, 2011).
In a bid to encourage informal caregiving, industrialized countries have implemented a range of caregiver supports including the establishment of multidisciplinary teams to assess needs and provide advice about care alternatives; direct services such as respite, counseling, and peer support; and benefits such as pension credits and payments to help preserve income, work prospects, and well-being (Karp, Ebrahimi, Marengoni, & Fratiglioni, Reference Karp, Ebrahimi, Marengoni and Fratiglioni2010; Keefe & Rajnovich, Reference Keefe and Rajnovich2007). However, such supports vary extensively across Canada and other jurisdictions. For example, care-leave arrangements, available in several OECD countries, differ in length, amount of compensation, and allocation mechanisms (e.g., care allowances, tax exemptions, or contributions to pension schemes). Eligibility also varies; criteria may involve combinations of income and needs tests, co-residency with care recipients, or minimum hours of caring (Change-Ability Inc., 2009; OECD, 2010). Although there may be growing consensus in principle on the need to support caregivers, there is little consistency across, and even within, jurisdictions about how this should be done in practice.
Such variability in policy approaches parallels a lack of consensus in the research literature concerning the balance between formal and informal care. As noted, one line of argument suggests a “supplementation” effect, whereby providing formal supports to caregivers can result in greater informal care capacity and reduced reliance on costly formal care. However, another argument points instead towards a “substitution” effect, whereby formal care “fills the gap” created when informal caregivers do not provide needed care (Denton, Reference Denton1997; Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003), or where the provision of more than minimal formal supports itself contributes to a decline in informal caregiving. Even under the most optimistic scenarios, there is likely a point at which added formal supports produce few benefits for caregivers and their loved ones, while generating higher system costs (Denton, Reference Denton1997; Edelman & Hughes, Reference Edelman and Hughes1990; Stabile, Laporte, & Coyte, Reference Stabile, Laporte and Coyte2006; Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003). The question, then, is not whether caregiver supports hold promise; it is at what point should supports kick in, and which supports work best for which caregivers and under what conditions?
Two related perspectives are worth noting. The first suggests a task specificity model in which there is a division of labor between formal and informal caregivers (Penning, Reference Penning1990): while informal caregivers are best equipped to perform non-technical tasks related to normal activities of daily living (ADLs) such as eating, personal hygiene, locomotion, and toilet use, more technical clinical tasks are performed by trained professionals such as nurses (Denton, Reference Denton1997). A second perspective, referred to as a hierarchical compensatory model, suggests that individuals prefer care to be provided first by children, then by other relatives, friends, and neighbors, with formal services filling a residual role; here, informal caregivers are seen as the first option, with the formal system a last resort (Denton, Reference Denton1997; Penning, Reference Penning1990).
Where does this leave people on the front lines of home care including case managers and caregivers? For its part, the province of Ontario has recently acknowledged the crucial role of informal caregivers (Change-Ability Inc., 2009; Williams et al., Reference Williams, Peckham, Rudoler, Watkins and Tam2013a, Reference Williams, Spalding, Peckham, Rudoler, Salib and Watkins2013b) and is now considering options to support this role including implementation of unpaid caregiver work leave. However, to this point, few policies, protocols, benchmarks, or best practices are in place to guide resource allocation decisions. In what amounts to a policy vacuum, political theory suggests that frontline decision makers, or “street level bureaucrats” (SLBs), will use their discretion to make policy “from the ground up”. Of course, this is not unique to home care case managers.
According to Lipsky (Reference Lipsky1980), SLBs include a range of professionals, like police officers and teachers, who have considerable scope to define and conduct their work. Although conventional concepts of bureaucracy specify what bureaucrats should do, to the point that it should not matter who is doing the job or who the client is, SLBs’ work is often highly individualistic, reflecting, in part, strong connections with clients with widely varying needs in widely varying contexts. The upside is that home care case managers enjoy considerable freedom for flexibility and innovation in response to diverse and growing needs. A possible downside is that power imbalances and subjective perceptions related to social positioning may prevail (e.g., around the role of women or the imputed strength of filial piety within certain cultural communities), resulting in bias or profiling, or simply inequitable or sub-optimal decisions which are not well-documented or evaluated, which do not lead to collective learning or best practices, and which are not accountable. While not suggesting a preference for rigid, bureaucratic constraints, these conditions do suggest the importance, at the very least, of understanding what decisions are being made and why.
Previous research in Ontario clarifies this point (Williams et al., Reference Williams, Spalding, Deber and McKeever2005). It examined home care allocation decisions for children with complex continuing care needs and their families between 1997 and 2002, a period characterized by capped home care budgets but steadily growing demands for pediatric home care services due to quicker hospital discharges and increasing numbers of children living longer with serious chronic illnesses such as cancer, cystic fibrosis, and cerebral palsy in community settings. Williams et al. observed an absence of standard assessment tools and resource allocation guidelines, as well as considerable variation in the mix and volume of services provided to family caregivers (mostly parents) across, and even within, regions of the province. Frontline case managers explained such variations in terms of a complex mix of clinical and non-clinical factors, including “family need”, which had to be taken into account when making home care allocation decisions. However, it was also clear that subjective perceptions of “family need” varied widely: while, for example, some case managers argued that working mothers required additional formal supports to maintain their dual roles as caregivers and labour force participants, others argued that such supports instead encouraged some mothers to do less than they otherwise could, or should, for their children (Williams et al., Reference Williams, Spalding, Deber and McKeever2005).
In the research described in this article, we extend and elaborate such insights to caregivers of older persons “at the margins” of losing independence and entering residential long-term care. In addition to generating intelligence about the mix and volume of supports that might be provided to caregivers of older persons at different levels of assessed need, we were interested in how frontline home care case managers perceived and attempted to manage the balance between informal and formal care in an environment characterized by growing demand, constrained resources, and little guidance about what to do, for whom, and under what circumstances.
Data and Methods
We used mixed methods, including a “balance of care” simulation in which frontline case managers constructed “care packages” for relatively homogeneous sub-groups of home care clients and caregivers at different levels of assessed need; and we conducted subsequent in-depth qualitative key informant interviews with a sample of case managers which explored the logic of their care decisions in greater depth. Ethics approval was received from a Health Sciences Research Ethics Board.
Balance of Care Simulation
In conceptualizing and conducting our analysis, we adapted the “balance of care” (BoC) model pioneered in the United Kingdom by the Personal Social Services Research Unit (PSSRU), University of Manchester, and adapted by us in a series of research projects conducted across Ontario (Challis & Hughes, Reference Challis and Hughes2002; Kuluski, Williams, Berta, & Laporte, Reference Kuluski, Williams, Berta and Laporte2012; Williams et al., Reference Williams, Challis, Deber, Watkins, Kuluski and Lum2009a). The BoC model aims to determine the most appropriate care setting and combination of services required by an aging population to remain living independently in the community. While conventional projections of the care needs of an aging population often focus primarily, or solely, on the demand side, assuming for example that greater numbers of older persons will require proportionately greater numbers of residential LTC beds, the BoC model draws attention to supply-side factors. It illustrates that the likelihood of maintaining independence depends as much on local capacity to provide community-based supports as on needs per se; where such capacity is greater, the “tipping point” for institutionalization will be higher, and more older persons, even at relatively high levels of need, should be able to age successfully at home. Conversely, where there is less community-based service capacity, the tipping point will be lower, and more older persons, even at relatively low levels of assessed need, will be directed towards residential long-term care (Kuluski et al., Reference Kuluski, Williams, Berta and Laporte2012).
In investigating such issues, BoC research projects typically employ an in vivo simulation in which frontline case managers use their expert knowledge of local needs and conditions to construct ideal home and community care “packages” required to appropriately support relatively homogeneous sub-groups of LTC-wait-listed older persons and their caregivers in the community.
We conducted a BoC simulation in June 2008 in partnership with the Central Local Health Integration Network (LHIN), one of 14 regional planning and funding bodies across Ontario, and the Central Community Care Access Centre (CCAC), the publicly funded home care organization for the region. In addition to assessing needs and purchasing home care services on behalf of clients, CCACs also control admissions to residential long-term care. The research we conducted was in a region that encompasses 1.6 million people, living in a mix of urban, suburban, and rural communities. The population within this region is notably diverse, with 36 per cent identifying as visible minorities (compared to a provincial average of 19%), and 46 per cent categorized as immigrants (compared to 27% for the province as a whole) (Central Local Health Integration Network [LHIN], 2007).
We used Resident Assessment Instrument – Home Care assessment data to stratify 2,631 individuals then on CCAC’s LTC wait list into 36 relatively homogeneous sub-groups. We stratified the groups based on four key variables as “crucial to care decisions” identified in the literature (Clarkson, Hughes, & Challis, Reference Clarkson, Hughes and Challis2005; Tucker, Hughes, Burns, & Challis, Reference Tucker, Hughes, Burns and Challis2008) and verified by frontline case managers, who participated in the first BoC model conducted in Ontario (Williams et al., Reference Williams, Challis, Deber, Watkins, Kuluski and Lum2009a). The four variables include::
Cognitive Performance Scale (short-term memory, cognitive skills for decision making, expressive communication, eating self-performance) recoded into two categories: intact, not intact.
ADL Hierarchy Scale (activities of daily living including eating, personal hygiene, locomotion, toilet use) recoded into three categories: no difficulty, some difficulty, great difficulty.
IADL Difficulty Scale (instrumental activities of daily living such as meal preparation, housekeeping, phone use, and medication management) recoded into three categories: no difficulty, some difficulty, great difficulty.
Presence of an informal/family caregiver in the home recoded into two categories: caregiver present, caregiver not present.
Each of the 36 sub-groups (the result of combining these four variables with two, three, three, and two coding categories respectively) was assigned a nominal family name (e.g., “Copper”, “Davis”). Using additional RAI-HC data (e.g., hours of informal caregiving), we then wrote detailed case profiles or vignettes for typical individuals in sub-groups that had sufficient numbers to warrant analysis (more than 5% of the population); these case profiles were written to look like the notes case managers would use when making actual care decisions. Over the 3 days of the simulation, an “expert panel” of 16 experienced frontline case managers recruited on a reputational basis from hospitals, long-term care, supportive housing, attendant care, adult day programs, and community support agencies, reviewed each case profile in detail and then constructed H&CC packages which in their view would be required to maintain older persons and their caregivers safely and appropriately in the community. During this process, considerable discussion focused on the role of informal caregivers and what direct and indirect supports they would need to maintain their role. (For additional information about the Balance of Care approach, please refer to Williams et al., Reference Williams, Challis, Deber, Watkins, Kuluski and Lum2009a.)
In-Depth Follow-up Interviews
We conducted in-depth, semi-structured follow-up interviews between July 2008 and January 2009 with 10 of the 16 case managers who had participated in the BoC simulation; of the six who did not participate, three refused because of work demands, while suitable dates and times could not be arranged for the remaining three. The 10 participating case managers were female, varied in age, and worked in different provider organizations spanning home care, community supports (e.g., adult day programs), and supportive housing. To minimize any concerns that case managers’ actual decisions or those of their organizations were being held to account, the researcher clarified that no individual or organization would be identified in the analysis, and that the focus was on what should be done in principle, rather than what was or had been done in practice. Interviews were conducted either by telephone or face-to-face. Each participant was fully informed of the purpose and aim of the research and asked to sign a consent form prior to their interview; the consent form stated that participation was completely voluntary, and that there would be no consequences should they decline to participate. Interviews included eight questions meant to elicit broad responses and lasted approximately 30 minutes to 1 hour. These interviews were instrumental in developing a better understanding of the logic used to make care decisions.
To ensure rigor, the interviews were audio recorded and then transcribed verbatim. This process ensured that all data were accurately gathered. The researchers participated in regular team meetings as a means to establish credibility and ensure that the information was reported accurately and completely. Transcripts were analyzed using QSR International’s NVivo, a qualitative software program that does not assist with the analysis process but rather facilitates the organization of open-ended responses into overarching dimensions or recurring concepts. The research used a deductive content analysis approach as it was structured with particular theories in mind, with the aim to better understand how particular theories apply to and/or inform home and community care case managers’ resource allocation decisions (Elo & Kyngäs, Reference Elo and Kyngäs2007; Hsiegh & Shannon, Reference Hsiegh and Shannon2005). Data collection and analysis were concurrent. During the initial reading of the transcripts, we used the constructs of substitution, supplementation, task specificity, and hierarchical compensatory model to inform the analysis process. Although we used these constructs to guide coding and analysis, this does not mean that all categories were anticipated prior to analysis. The benefit of this approach was the ability to revise the concepts as data emerged that were not easily classified, creating well-refined concepts (Downe-Wamboldt, Reference Downe-Wamboldt1992). Using this approach, we identified a number of recurring concepts which we then examined in conjunction with the findings from the BoC simulation (Elo & Kyngäs, Reference Elo and Kyngäs2007; Hsiegh & Shannon, Reference Hsiegh and Shannon2005).
Findings
There were three key recurring themes in the qualitative interviews which elaborated findings from the simulation. These addressed: (a) the unit of care, whether caregivers and care recipients should be considered separately or together; (b) the mix and volume of formal services required by caregivers and care recipients at different levels of need; and (c) the impact of ethno-racial diversity.
Theme 1: The Unit of Care
Case managers unanimously agreed that informal caregivers play a vital role in maintaining at-risk older persons in the community. They recognized that the ability of older persons to age successfully at home depends not only on their individual needs and capacity, but on the willingness and ability of informal caregivers both to provide direct care, and to access needed formal care. Particularly for older persons with cognitive deficits due to Alzheimer’s disease and related dementias, the presence or absence of a caregiver in the home was seen as a “game-changer” since formal providers usually did not have the capacity, budget, or willingness to provide 24/7 surveillance and support. Nor would formal providers be willing, except on an extraordinary basis, to maintain older persons in situations they did not deem safe, which would usually be the case for individuals who could not be relied on to use good judgement, or to safely conduct everyday activities such as meal preparation. Even for cognitively intact older persons, informal caregivers were seen to play an essential role by keeping people socially connected, helping with the everyday but essential activities such as meals, banking, and personal care. Informal caregivers also provided peace of mind, since older care recipients could rely on them to help face new challenges as they aged and their capacity declined. A number of case managers (n = 8) characterized caregivers as providing a safety net which could keep older persons independent and also keep them out of hospital emergency rooms and long-term care.
Moreover, when older persons did become ill and required hospitalization, informal caregivers were crucial to a timely return home. Particularly for older persons requiring convalescent care after surgery, as one case manager in our study noted, informal caregivers played “a vital role. If it were not for the caregiver, they would be unable to return home [from the hospital].”
In this connection, case managers observed a key difference between acute care and home care. While the former tends to be relatively short-term, focusing on a particular illness or procedure in an institutional setting apart from the social context of the individual, the latter is often longer-term, addressing multiple ongoing needs where the individual lives. In the acute care setting, expert-provider and patient roles are clearly differentiated; in the community, caregiver and care recipient roles are often tightly entwined in contexts which vary considerably, and which evolve as older persons age, as their needs change, as caregiver capacity changes (and, with older caregivers, often declines), and as access to formal care changes. Rather than considering only the needs of the care recipient, caregivers and care recipients in the community should be seen as parts of a single “unit of care”. Said one case manager:
“We do, and need to, consider the needs of informal caregivers. Especially if we identify that the caregiver is really overwhelmed or in need of other supports, then we do provide respite care and we do provide counselling. So everything when we consider, when we assess the needs of the client, it is not just the client. We assess the needs of the whole family. We take a holistic approach and make sure that clients’ needs are met and at the same time family needs are also met. So we need to consider both.”
The case manager highlighted that assessments and care plans should be done considering the whole social environment, assessing both the needs of the caregiver and the needs of the client together as the “unit of care”. Said another case manager:
“Generally what I do is, you find out what the person needs, and what the family is available for and what they can do. Then you find out what the system can put into place by CCAC or something that is funded, and then you augment and help the family out as much as possible.”
Theme 2: Balancing Formal and Informal Care
As noted, in our simulation we asked case managers to construct home and community care packages required to maintain older persons at different levels of assessed need safely and appropriately in their own homes. Due to the way in which we constructed our case profiles, half were for older persons with caregivers living in the home, and half were for older persons with no caregiver present.
As an example, Table 1 presents care packages constructed by the case managers for “Copper” and “Davis”. Individuals represented by these two case profiles had similar characteristics: they were cognitively intact and required little assistance with activities of daily living (ADL) such as eating, personal hygiene, and toilet use, or with instrumental activities of daily living (IADL) such as meal preparation, housekeeping, or medication management. However, while Copper had a live-in caregiver, Davis did not. Thus, these two corresponding care packages provided insight into how case managers responded to the presence, or absence, of a caregiver in the home.
Table 1: Care Packages for “Copper” and “Davis”: Central
For both Copper and Davis, case managers recommended services addressing existing needs, as well as services aimed at preventing problems and maintaining the older person’s ability to age at home over the longer term. This included personal care and support in the home (e.g., bathing, housekeeping, Meals on Wheels), transportation to outside programs and services (e.g., congregate dining), as well as time for the case manager to assess needs on an ongoing basis, coordinate services, and plan for the future.
Also, for both Copper and Davis, case managers included supports for caregivers (e.g., support groups, counseling, education, social work) on the assumption that even if they did not live in the home, caregivers would be present to some extent, and they would contribute crucial instrumental and emotional supports. As one case manager observed:
“I have seen a number of seniors living alone with their spouse but their children live far off, but they do provide support, informal supports, instrumental support – they do visit them regularly and make calls regularly. That is the way they remain in contact with them.”
Case managers noted that while live-in caregivers tended to be spouses, those living outside were usually adult children and friends. This situation affected the mix of formal services required, since spouses were more likely to provide more hours of care and more intimate care (e.g., personal hygiene), whereas children, friends, and neighbors typically provided instrumental supports (e.g., visits or grocery shopping) and fewer hours of emotional care. For example, one case manager highlighted the various and different roles played by spousal and adult child caregivers:
“A spouse or a daughter tend to provide more physical care and are more supportive and are more involved on a general basis. A son I think will provide the emotional and the IADL [support] but they find it uncomfortable to move into a caregiver role.”
Nevertheless, case managers emphasized that, whether live-in or live-out, caregivers needed to be considered an integral part of the unit of care. There were also some notable differences in approaches to this pair of case profiles which illuminate how informal and formal care intersect. For example, about twice as much professional case coordination was budgeted for Davis (without a live-in caregiver) than for Copper, highlighting the role that informal caregivers play in accessing and coordinating formal services. Also, Davis, but not Copper, was prescribed home maintenance (e.g., house repairs), reflecting the assumption that caregivers living in the house would be expected to do at least some routine maintenance.
Similar patterns are found in Table 2 which presents the care packages constructed for “C. Cameron” and “D. Daniels”. Both case profiles represent individuals with high needs: they had cognitive deficits, and they were completely dependent on others to perform routine ADLs and IADLs. Again, the main difference is that Cameron had a live-in caregiver, while Daniels did not.
Table 2: Care Packages for “C. Cameron” and “D. Daniels”: Central
LTC = long-term care
PSW = personal support worker
PT = physical therapy
Accordingly, the list of services for both of these case profiles is longer, and the frequency of services greater, than for the care packages created for Copper and Davis. For example, pharmacists were included to check medications, care recipients were enrolled in wandering registries (a program designed to identify an individual who is lost and return them safely home), and adult day programs (including those specializing in Alzheimer’s and related dementias) emerged as a key nexus of care, with care recipients slated to attend up to six days each week. The big difference is that case managers determined that Daniels required 24/7 supervision and monitoring by a paid worker, where Cameron did not, pointing again to the key personal and financial contribution of informal caregivers. Indeed, although case managers constructed the package for Daniels, they observed that it would rarely be economically feasible since home care agencies could not cover the costs.
These packages also draw attention to the fact that caregiver needs may be met directly and indirectly within care packages designed for the “unit”. For example, caregivers benefit directly from such caregiver-specific supports as counseling, education, and opportunities to engage with other individuals experiencing similar challenges. Of course, caregivers may also benefit indirectly from other services such as congregate dining which require the older person to be out of the home for a predictable period, thus allowing the caregiver some respite and time off, and reducing effort spent in meal preparation. Likewise, home maintenance, home help, and in-home support benefit both the older person and the caregiver, as both require a safe, livable environment. A case manager explained it further:
“Here we have frail day programs and Alzheimer’s day programs, so we encourage them to send their loved ones to our programs so at least they can have [free] time.”
Case managers noted that although caregiver supports may actually increase the costs of care packages, the benefits actually apply to more than one individual; outcomes evaluation and economic analyses of cost-effectiveness should take this into account.
Nevertheless, in spite of being able to reach consensus on the contents of ideal care packages for each of the care profiles, the case managers vigorously debated the balance between public and private responsibilities. While no case manager argued that caregivers and families should shoulder all responsibility for the care of older persons, all agreed that informal caregivers would be expected to make a substantial, albeit variable, contribution. Rather than supplanting the role of informal caregivers, or encouraging dependence, case managers strongly asserted that their role was to encourage continued caregiving.
Of course, there were contending views on exactly how much should be expected, and on how expectations would vary due to a range of factors. For example, it was stated that male caregivers often required more formal supports than females because they were not socialized to the caregiving role and had less-developed skills in areas such as shopping, cleaning, cooking, and personal care. Financial resources were also raised; case managers questioned whether well-off families should expect the same level of publicly funded supports as lower-income families who have less ability to purchase what they required. Diversity was also an issue: should more be expected of caregivers from cultures with a tradition of “filial piety” and taking care of older people?
Perhaps most importantly, case managers observed that in spite of the importance and complexity of such issues they had few opportunities to address them collectively in a “safe” environment where they could “take off their institutional hats”. Lacking such opportunities, and without clear guidelines, they relied heavily on their own experience to make the best use of always-stretched resources.
Theme 3: The Impact of Diversity
Given that the region involved in our study is one of the most culturally diverse regions in Ontario, it is not surprising that diversity emerged as a common theme. Case managers emphasized that cultural differences can have an impact on the balance between informal caregiving and formal care in multiple ways. For example, it was observed that people from recently established cultural communities tend to live more collectively than do those from more established communities, with clearer expectations that family can and should care for older members. One case manager stated:
“There is this tradition of ingrained cultural expectations from when they grew up, this filial piety. We have seniors from all over the world … to me there is generally this expectation that the parents, the older people, expect their children to take care of them.”
This contrasted to “white Canadians” who, in another case manager’s view, were more likely to live alone, and to be isolated from family. While older persons from mainstream cultures therefore tended to be more dependent on formal care as they aged, case managers assumed that older persons in diverse communities would rely more on extended families to do the “heavy lifting” (n = 7):
“The Anglos or Caucasians don’t necessarily expect that, so they don’t drill it into their children as they grow up. The relationship of caregiving within a cultural context is very important. Every culture puts a different slant on the relationship between parents and children. A number of South-Asian seniors were discharged home because both sides … cannot adjust to long-term care and the children feel so guilty.”
Case managers also noted that newer ethno-racial communities may be more likely to live in multigenerational households providing built-in support for children and older persons:
“A senior or elder might be living with them because they have sponsored them over [to Canada] to look after their children and now it has gone past that point. The sponsored client who can’t go to a nursing home is another problem because they can’t afford to pay.”
While most thought traditions of caring for older families to be a “plus”, since older persons in such families did receive substantial informal support, this could result in added costs for families, particularly women in younger generations, who often struggle to balance education, jobs, and family care, including the care of their own children. Indeed, a strong cultural expectation that daughters and wives should provide the bulk of personal care and that they should feel guilt and shame if they did not provide complete care to their aging family members, could mean that these caregivers did not draw on formal supports before crisis occurred. One case manager stated:
“You may have people who feel it is their obligation to assist their family member that they can’t legitimately pass it off without carrying a lot of guilt and also the person needing care also feels that it is an obligation. It is a mutual thing … You feel guilty if you don’t do it and you feel guilty because your whole society is telling you that you should.”
This being said, case managers also identified that such households may also “mask” individual needs from the formal system, and act as a barrier to formal services, such that when the informal capacity to meet care needs is exceeded, there may be few viable community care options. This was explained as follows by a case manager:
“So they may have difficulty accepting care from formal caregivers because they feel that part of their culture is that they need to take care of their own. In that case the formal system has to be aware that some of those groups won’t ask for help even if they need it.”
The case managers in our study emphasized that, particularly given growing diverse populations, cultural competency was increasingly required when engaging in care planning. As one member on the study’s expert panel put it:
“It may take a lot to get them to trust you and understand they are not abandoning their loved one. It is doing it in the way that there is the support and recognition on the family tradition and expectation, but there is also recognition on the impact it might have on the informal caregiver and presenting it that way so it is not a failure for the informal caregiver. But it is a necessity to help them help their loved one for a longer period.”
Case managers suggested that although cultural competency likely requires short-term investments, these investments would pay dividends over the longer term. For instance, it was noted that staff have to be appropriately trained, entailing time and resources. Food preparation, particularly where specific combinations of food products may not be combined (e.g., meat and dairy), can require separate preparation facilities. Such costs may be lower where communities already have well-established service infrastructures and where trained workers are more readily available (such as in the Chinese community), as compared to communities with less well-established infrastructures and human resources pools (such as in the Somali community). Rather than case managers’ attempting to estimate exact costs, the approach taken in the BoC simulation was to add a “diversity overhead” to H&CC packages, equal to 2 per cent of service costs, to cover interpretation, translation, and training.
Discussion
Consistent with a growing international literature on caregiving, case managers in our study emphasized that in decision making in home and community care settings, the older person and the informal caregiver together constitute the unit of care (Navaie-Waliser et al., Reference Navaie-Waliser, Feldman, Gould, Levine, Kuerbis and Donelan2002; Williams et al., Reference Williams, Peckham, Rudoler, Watkins and Tam2013a, Reference Williams, Spalding, Peckham, Rudoler, Salib and Watkins2013b). In acute care settings where individuals are treated on a short-term episodic basis apart from their social context, caregivers may play important though more limited roles; in H&CC however, where care is often complex and ongoing, informal caregivers play more central and demanding roles over extended periods of time, often until the end-of-life. In addition to providing direct instrumental and emotional supports, informal caregivers often access and coordinate multiple formal services and service providers in the home and make formal care plans viable (Change-Ability Inc., 2009; Keith, Wacker, & Collins, Reference Keith, Wacker and Collins2009). In spite of differences about what caregivers should receive, case managers unanimously agreed that the needs of caregivers and care recipients thus should be considered conjointly when assessing needs and planning care.
The presence or absence of a caregiver in the home turned out to be a crucial factor in case managers’ decisions concerning care packages, albeit with varying results. Although some case managers favored more extensive care packages to support both the caregiver and older person, others felt that formal services should be provided only after taking into account the capacity of the informal caregiver to meet the older person’s needs. Moreover, case managers had differing views regarding whether caregivers should be expected to provide support to the extent of their capacity and whether formal services should be allowed to substitute for informal caregiving. It is hereby evident that case managers’ responses span the range of concepts presented in the literature which suggest a supplementation effect or, alternatively, a substitution effect.
Such differences in views have important real-life implications. Given few guidelines, protocol, or best practices, case managers have considerable discretion in determining the mix and volume of H&CC services that older persons and caregivers actually receive; this may be particularly true in Ontario where there are service ceilings but no service minimums. Moreover, in Ontario, only care recipients, in this case older persons, qualify as “clients” – caregivers have no formal status except by virtue of their relationship to the cared-for person. In what amounts to a policy vacuum, what supports caregivers and older persons receive can depend heavily on subjective interpretations of “need”.
For instance, perceptions of cultural differences played out strongly in the BoC simulation. As an example, the literature suggests that filial piety and family obligation may not be reliable sources for provision of care (Lai, Reference Lai2007), yet these were seen by some case managers as driving resource allocations. In some cultural communities, ideas involving living arrangements, employment, and family structures are shifting and altering the perceived expectation of filial piety and family obligation (Dilworth-Anderson et al., Reference Dilworth-Anderson, Brummett, Goodwin, Williams, William and Siegler2005; Lai, Reference Lai2007). Indeed, some case managers cautioned that formal supports for caregivers and older persons should not be assumed to be any less important in certain ethno-cultural communities than in the “mainstream”. They contended that a failure to connect with formal care at lower levels of need may lead to situations where older persons access the formal system only after they and their families are in crisis and when the only viable options are hospitalization and/or residential long-term care. In this case, some case managers drew on the logic of supplementation, whereby providing additional formal supports at earlier stages might produce further capacity of the older adult and their families and thereby avoid the use of more costly formal care at a time when it is essentially “too late”.
H&CC care packages created during the BoC simulations demonstrated various approaches to supporting the unit of care. When a caregiver was a live-out caregiver, indirect supports were emphasized; where caregivers lived in, there was a greater focus on direct supports. Such variations reflect the belief that when a caregiver is present there might be less need for certain types of formal supports (such as Meals on Wheels) and perhaps a greater need for other supports (e.g., caregiver respite); this suggests the relevance of a substitution and/or task specificity model of care. For example, some case managers on our expert panel thought that providing Meals on Wheels could encourage caregivers who could otherwise provide such meals to retract such care. The care packages demonstrate that the expert panel members saw the value of addressing the needs of both caregivers and care recipients as an integrated unit: since many services can be mutually beneficial, different services can be substituted for the same purpose. The inclusion of both direct and indirect formal caregiver supports provides further evidence to suggest that the study’s participating case managers also saw potential for a supplementation effect where providing formal supports may result in informal caregiver sustainability.
The variable approaches taken by case managers suggest that their decisions are impacted by a range of factors unique to older persons and caregivers, and, of course, to case managers themselves. This is consistent with the idea of “street-level bureaucracy” which emphasizes the considerable discretion that frontline professionals such as police officers and teachers experience in their work and the challenges this can pose. On the one hand, discretion and flexibility based on professional training and insight are desirable since “one size” clearly “does not fit all”. On the other hand, discretion and flexibility can result in decisions which are, or could appear to be, inequitable, sub-optimal, or inconsistent, which do not result in collective learning or best practices, and are not easily contested given extant power imbalances between informal caregivers (who require assistance) and case managers (who control available resources).
It is important to emphasize that this should not be interpreted as a critique of individual case managers and the often difficult choices they are required to make within a context of growing need but constrained resources; rather, it a statement of the fact that they make these choices in very complicated circumstances without the benefit of clear guidance about how trade-offs should be managed. Indeed, as we have noted, case managers’ different perspectives clearly parallel a lack of consensus in the literature, and among policy makers, about what should be done for caregivers and why. In this vacuum, case managers will use their discretion, which is what they are asked to do, essentially creating caregiver policy from the ground up, but without mechanisms for accountability or collective learning.
Limitations and Future Research
The presence or absence of an informal caregiver in the home was one of four key measures used to stratify LTC-wait-listed individuals in Ontario BoC projects. This is a relatively conservative measure, as it does not account for others, including friends, neighbors, and family members living outside the home, who might also provide some level of informal care. Therefore, the analysis derived out of the BoC projects typically assumed the role of only one live-in caregiver.
Future research will use secondary data analysis of the Resident Assessment Instrument for Home Care to “cross check” the current research to better understand what is really happening on the ground when considering the role and involvement of informal caregivers. Specifically, research will aim to address continuing debates found in the literature surrounding the amount to which providing formal services can parallel, complement, compete with, or substitute for care provided by informal caregivers. Second, research will seek to identify how actual service utilization of formal services is related to, or affected by, the presence of informal caregivers.
Conclusions
Two clear conclusions can be drawn from this research.
As identified in the BoC simulations and through the follow-up interviews, the “unit of care” in community settings should be viewed to include both the client and caregivers.
Having said that, the logic of resource allocation can vary considerably, in part due to differences in the characteristics of older persons and caregivers, and in part due to differences in the individualized characteristics, experiences, and perceptions of case managers. The differences in resource allocation decisions poses important questions about the nature of allocation decisions, about the extent to which individual decisions contribute to collective learning and best practices, and about the extent to which they are contestable and accountable, particularly given the power imbalance between informal caregivers and case managers.
Although H&CC case managers require flexibility in making decisions, there appears to be a countervailing need to provide guidance at a system level about what caregivers and case managers should expect. The international literature is of limited assistance in this regard, since it also provides inconsistent and conflicting evidence about whether, or under what conditions, formal supports for informal caregivers encourage increased (or at least continued) caregiving, with lower system costs, or whether the provision of formal supports may actually discourage informal caregiving, with increased system costs. Future research could help to fill this vacuum with more-granular evidence as to what supports appear to work best for which caregivers in what contexts. As awareness grows about the crucial role of informal caregivers in supporting older persons and sustaining health systems, there is much to learn about how best to support caregivers, cared-for persons, and their networks (Brookman, Holyoke, Toscan, Bender, & Tapping, Reference Brookman, Holyoke, Toscan, Bender and Tapping2011; Shaver & Fine, Reference Shaver and Fine1995).
