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Dementia Home Care Resources: How Are We Managing?

Dementia Home Care Resources: How Are We Managing? Hindawi Publishing Corporation Journal of Aging Research Volume 2012, Article ID 590724, 11 pages doi:10.1155/2012/590724 Research Article 1 2 2 1 1 Catherine Ward-Griffin, Jodi Hall, Ryan DeForge, Oona St-Amant, Carol McWilliam, 1 3 4 Abram Oudshoorn, Dorothy Forbes, and Marita Klosek Arthur Labatt Family School of Nursing, Faculty of Health Sciences, University of Western Ontario (UWO), London, ON, Canada N6A 5C1 Health and Rehabilitation Sciences, Faculty of Health Science, UWO, ON, N6A 5C1, Canada Faculty of Nursing, University of Alberta, AB, T6G 2R3, Canada School of Health Studies, Faculty of Health Sciences, UWO, ON, N6A 5C1, Canada Correspondence should be addressed to Catherine Ward-Griffin, cwg@uwo.ca Received 13 June 2011; Accepted 5 September 2011 Academic Editor: Lindy Clemson Copyright © 2012 Catherine Ward-Griffin et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. With the number of people living with dementia expected to more than double within the next 25 years, the demand for dementia home care services will increase. In this critical ethnographic study, we drew upon interview and participant data with persons with dementia, family caregivers, in-home providers, and case managers in nine dementia care networks to examine the management of dementia home care resources. Three interrelated, dialectical themes were identified: (1) finite formal care-inexhaustible familial care, (2) accessible resources rhetoric-Iinaccessible resources reality, and (3) diminishing care resources-increasing care needs. The development of policies and practices that provide available, accessible,and appropriate resources, ensuring equitable,not necessarily equal, distribution of dementia care resources is required if we are to meet the goal of aging in place now and in the future. 1. Introduction and their familial and formal caregivers. Furthermore, lim- ited resources to implement and sustain a home care in- The number of people living with Alzheimer’s disease or frastructure [16] and a shift of chronic care to community related dementia (ADRD) is expected to more than double settings without the corresponding transfer of funds [17] within the next 25 years, affecting over 1.1 million Canadians compound the difficulties encountered. Although provincial and their families [1, 2]. Half of those with dementia live at government-funded home care agencies in Canada are man- home [3], and this proportion is increasing [4], especially dated to assess and coordinate the health care needs of amongst women [5]. Furthermore, families and friends are community-dwelling older adults with dementia, there is often the ones called upon to provide between 70%–90% of evidence that increasing caseloads among direct care pro- care [6] with adult children providing more care for their viders [13] and case managers [18]havenegativelyimpacted mothers than for their fathers. Clearly, the increasing number the quality of home care. of people with ADRD will inevitably affect both formal and In Ontario, 67% of formal home care has been pro- familial care for persons with ADRD who, on average, require care for approximately 8.5 years [7]. vided by personal support workers and 27% by nurses, many of whom assume the role of case manager [19]. Case The challenges of providing home care have been well documented. Lack of support for family caregivers [8–11], management, including assessment of client care needs and lack of recognition and poor working conditions of home service allocation, coordination, monitoring, and evaluation support workers [12, 13], early hospital-to-home discharge based on assessed need, is a major strategy for home care policy [14], and poor system coordination [15]are examples management. Case management of home-based dementia of the challenges faced by persons living with dementia care generally falls within one of three major models: (1) a 2 Journal of Aging Research brokerage model wherein case managers are charged with the the reservation of social work services for difficult cases responsibility of assessing the needs of clients, and based on [9]. While collaboration is typically sought by both formal these assessments, “decide, access, coordinate, monitor, and and familial caregivers, these individuals are situated in an control amounts of timeframes of resources and services” emotionally charged “intermediate” domain, a contested ar- [20, page 120]; (2) integrated service allocation and care ea between the public world of paid care and the private managed by teams of professional providers who work directly world of family care [10, 11]. Thus, alliances between formal with clients, sharing the responsibility and accountability and familial care providers in home care are often formed for the management of both care and service allocation; (3) under the guise of partnerships. consumer-managed care, directed by the clients themselves, Those studies that have explored home-based dementia where clients select different mixes of services to achieve what care services have focused on the relationships between they value [21]. All three models, however, typically rely on a family caregivers and home care providers [31–33], family range of human resources, which include family, friends, and caregivers’ expectations of providers [15], the use and satis- neighbours (informal network), as well as professional and faction with home-based service for persons with dementia paraprofessional services (formal network). [34], and the relationship between formal and informal care With the impending increase in the population of older systems [35]. In a mixed-method study, Forbes et al. [34] persons in Canada, the availability of these human health found that 39 family caregivers of persons with dementia resources to meet the growing demand for home care services identified availability and accessibility issues in seeking and is of rising concern to health care planners, policymakers, using formal home care and community services in three and other stakeholders [22, 23]. Furthermore, the need to provinces in Canada. The qualitative component of this both gain access to formal services and to sustain high study revealed challenges of service availability (e.g., lack of levels of care may well exceed families’ resources [24]. Con- community based dementia care) and accessibility (e.g., lack sequently, as demands for home care escalate and the number of system coordination), however, our understanding into of people living with dementia in the community increase, how the two care systems might “work together” in providing investigation into the management of dementia home care accessible and appropriate resources remains unclear. resources is critical if the goal of aging in place is to be Although the relationship between the informal and realized. formal care systems has been studied in a variety of settings, This article focuses on home-based dementia care from including home care [36–38], there are inconsistent findings the perspective of persons with dementia, their family mem- about whether they substitute or complement one another. bers, and home care providers, situating these experiences For instance, Zhu et al. [35] found that the utilization within a sociocultural context. In particular, we examined of formal home care and informal care was not influ- the relational experiences of clients, family caregivers, and enced by the use of the other, and yet, there is empirical providers involved in dementia home care, and the contex- evidence that the two care systems are complementary tual factors that influence the formation and negotiation of [36, 37]. The theoretical basis and empirical support for those relationships, with the ultimate aim of identifying the both these approaches to understanding the link between necessary policy and practice changes to improve dementia formal and informal care systems are problematic [38]. First, home care. Four integral relational care processes emerged the “partner relationship” between paid and unpaid care from our findings: reifying care norms, managing care providers is espoused primarily by formal service providers resources, making care decisions, and evaluating care practice. and administrators as a way to limit financial expenditures of This paper focuses on one relational care process, managing formal home services. In other words, the complementarity care resources. of the two systems is less compatible than is often assumed. Second, the analysis that guides most empirical studies on the relationship between formal and informal care systems 2. Literture Review is premised on the gendered assumption that the two are Previous research on home support has identified that distinct entities, with family care rarely depicted as “care one of the challenges for home care workers is forming work”. This view not only simplifies the relationship between and maintaining relationships with clients and their family formal and informal caregiving, but it also fails to capture the specific commonalities and discerning differences between caregivers [25, 26]. Although the formal sector relies heavily on familial caregivers (families and friends) to provide the them. Thus, the differences between the two care systems vast majority of care to persons with dementia, there has with respect to power, status, authority, and resources are been little investigation of the relationship between the rarely considered in these studies. One exception, however, formal and informal home care networks. The few studies was Ward-Griffin and Marshall [38] who found home care that have been conducted on home care [9, 27–30]have nurses and family caregivers of older chronically ill elders revealed an “uneasy alliance” and power struggles between living in Canada engaged in a bidirectional labour process the family caregivers and providers. Analysis of focus groups of “work transfer”, one that depended on the “free” labour of family caregivers. Although this particular study sheds of 46 American home care clinicians revealed five inherent conflicts affecting family caregiver-clinician interactions: light on the complexity and interconnectedness of formal- unrecognized family involvement; competing priorities and informal care and points to the need to conceptualize eld- ercare as work, regardless of who does it, it did not focus on little time; lack of appropriate services to meet family needs; dual obligation of patient advocate and service gatekeeper; dementia home care. Journal of Aging Research 3 There is also a need to examine the sociopolitical context in the study, clients with Alzheimer’s disease or related of dementia home care because it permeates care systems at dementia had to speak and understand English, be at least all levels [39]. For instance, a family member’s “decision” to 60 years of age or older, and have at least one family member provide care to persons with dementia and to use formal or close friend providing regular care (minimum of 4 hours care services depends on a number of sociocultural factors, of direct or indirect care per week). Once the client and fam- such as the availability and cost of these services [40]. Family ily caregiver(s) agreed to participate in the study, the home caregivers of persons with dementia also face a number of care worker(s) assigned to their care, for a minimum of challenges in obtaining adequate, appropriate, consistent, three home visits, was invited to participate in the study by a flexible, and sufficienthomecareservices[33, 34]. Since member of the research team. the conceptualization and availability of both informal and formal resources are profoundly shaped by the beliefs, values, 3.3. Sample. The total sample was comprised of nine net- practices, and policies within the current home care context, works, which included nine older adults with dementia, further investigation is warranted. 25 family caregivers, 10 formal healthcare providers, and In summary, there is limited research that examines the 7 CCAC case managers. The nine persons with dementia sociopolitical context of dementia home care. Given the (PWD), four of whom were male, ranged in age from 75 to increasing use of home care services, the projected decreasing 91 (average 83.7 years). All but one were married, one was availability of family caregivers and the increasing number of a widow, three had postsecondary education, one had only persons with dementia health care practitioners and policy primary education, and the remaining PWD had secondary makers would benefit from an increased understanding of education. Standardized Mini Mental State Exam (SMMSE) the perceptions and experiences of persons with dementia, scores ranged from 10/30 to 26/30, averaging 15.8 (n = 5; and their familial and formal care providers with regards to four scores were not obtained due to participants’ relocation, the management of home care resources. refusal, or confusion). All PWD and their families were white and of Anglo-Saxon descent. Of the 25 family members who 3. Study Design were spouses (n = 5, 3 of whom were male), the average age was 78.8 years. Among the adult children (n = 20, 15 of The purpose of this critical ethnography was to develop a whom were female), the average age was 50.1 years. All but better understanding of home-based dementia care within a three adult children worked full time. sociocultural context, shedding light in particular on those All nine networks were receiving formal home care sociocultural, taken-for-granted values, beliefs, and practices support from personal support workers (PSWs). At least one embedded in the dementia home care culture. PSW was recruited for each network (except network 9); for networks 3 and 8, two PSWs were recruited. In total, ten PSWs were recruited, two of whom were male. The average 3.1. Setting. As in other Canadian provinces, home care in age of the PSWs was 52.8 years. Four worked full time, the Ontario entails the delivery of a wide range of health services others worked part time or on a casual basis. All seven home to people of all ages who may be recovering from an illness, care case managers were female and of Anglo-Saxon decent. disabled or terminally ill. The central agency through which Their ages ranged from 45 to 57 (average: 50.9) years, and families access community care begins to manage a “case” they had worked between 4 and 20 (average: 9.4) years as a by triaging it into one of five care domains: acute care, case manager. Four of the managers coordinated caseloads rehabilitation, maintenance, long stay supportive, and end- that were primarily urban (i.e., within a large city in southern of-life care; seniors with dementia are usually classified into Ontario); the other three case managers provided services for maintenance or long-stay supportive categories. Thereafter, those living in the surrounding counties (i.e., small towns care planning begins with a standardized assessment of the and rural settings). person with dementia’s functional independence, couched within a goal-oriented model of client empowerment that aims to match services with assessments and with client 3.4. Data Collection. A total of 52 in-depth, semistructured preferences and strengths. As such, individuals receiving interviews were conducted with clients, family caregivers, home care may be provided with medical, nursing, social, or and PSWs. Each participant was interviewed two to three- therapeutic treatment or with assistance with essential activ- times over a period of 19 months (January 2007–July ities of daily living. The fiscal constraints that characterize 2008). At the beginning of the initial interview, participants the province of Ontario’s health care, however, preclude the were asked to complete a brief demographic questionnaire, provision of assistance with instrumental activities, such as and for each person with dementia, an SMMSE score was housework, shopping, or meal preparation. obtained to describe the level of cognitive impairment. With the exception of the focus group interview with the 3.2. Recruitment. Case managers of the local Commu- case managers (which was conducted at the local CCAC nity Care Access Centre (CCAC) and other community office) and two interviews conducted by phone, all the in- collaborators served as key informants assisting with the terviews were conducted in the home of the client and/or identification and recruitment of potential procedures. All family caregiver. After each interview, researchers dic- persons involved in the “caregiving network” of nine persons tated full field notes about their observations, perceptions, with dementia were requited for this study. To be included insights, nuances of communication, nonverbal expressions, 4 Journal of Aging Research caregiving behaviors, and interactions between and among know.” “Well when he gets in agony, call me all participants [41]. back.” And I said, “I beg your pardon?” So I called the neurosurgeon... The gal on the desk answered it but she gave the phone to him, 3.5. Data Analysis. Following the guidelines for data analysis and he said, “What’s going on?” and I said, of Lofland et al. [42], emerging initial codes were identified “Thomas’s catheter is plugged... and the [nurse] from the transcripts and the field notes. Memos were used as told me that I was to wait until he was in pure supplementary notes and background information to inform agony, and then call her back.” And he said, the analysis. After an iterative process of refining the initial “I beg your pardon? Do you have her phone codes, focused codes were applied to “clean” transcripts in an number?” And I said, “Yes I have.” “Well you give attempt to identify gaps or missing codes. The final analysis it to me. I’ll get back to you.” Within 10 minutes steps involved the development and refinement of the major he called back... and he said, “Sit back and themes, the identification of phrases that most accurately relax...she’s coming in.” But that kinda thing, illustrated these themes, and diagramming, a process that you know? Who needs it? Nobody! facilitated an understanding of how the focused codes related to each other in order to conceptualize the larger picture [42]. Furthermore, many family members reported feeling unheard when they expressed concerns or an inability to 4. Findings continue providing care. Another spousal caregiver stated that she only received “help” from the formal care system Based on our analysis, three interrelated, dialectical themes when she threatened to stop providing unpaid care: were identified: (1) finite formal care-inexhaustible familial care,(2) accessible resources rhetoric-inaccessible resources My breathing has been terrible since I had my reality,and (3) diminishing care resources-increasing care heart attack ... andI’vebeenbegging forhelp needs. Although the management of dementia home care ... Nobody listened until now. And Jill [case resources is complex, study findings suggest that the lack of manager] called me when I was trying to fix available, accessible, and appropriate formal care resources supper and I couldn’t breathe. And she said, has ultimately contributed to the failure to provide optimal “Joan, you don’t sound very good!” I said, “No home-based dementia care. ...Sorry Jill. I’m ready to give it up...Ican’t do this anymore. This is just too hard to do.” [She 4.1. Finite Formal Care—Inexhaustible Familial Care. Study responded] “Oh no! Don’t do that. No, no don’t findings revealed that the resource allocation by the formal do that!” So I received extra help... But it makes sector depended heavily on families and friends to provide you feel you are on your knees, all the time the bulk of care and assistance to persons with dementia, and begging for some help. only as a last resort, were formal care resources utilized to supplement this care. The notion of formal care resources as Despite the potential for “caregiver burnout”, case managers scarce commodities produced, by default, a view that familial were required to distribute formal care resources within the care resources were abundant. Furthermore, the need for current fiscal constraints of home care. This approach to formal care assistance tended to be based on the assumption dementia home care limited them in providing adequate that family members were not only capable, but (ought to be) support, even when familial care is exhausted. As one case willing to provide care to members with dementia. Although manager reported: all study participants addressed this “unspoken” reality that families provided the necessary care first and foremost, case Like that caregiver burnout, drop dead thing, managers were positioned to actively cultivate the availability the back-up plan for [the care of] these memory of familial care resources. As one case manager explained: clients, there isn’t one. So I mean I think that’s how we can do it [alleviate caregiver I have a new demented person and the first burden]...four hours a week is what we’re going thing that I did is to try to rally every family to provide and we do whatever we can to make member... and gather as much family or friends it work. that you can to start off with and focus on and get as much care in there as needed. Using a supplementary approach to managing dementia care resources, however, did not alleviate caregiver burden Care resources provided by the formal sector were viewed in this study. Instead, the provision of care to persons with as supplementary “help” to the family, being made most dementia over long periods of time exhausted the capacity of readily available when the family member was viewed as most families. Expectations of families to provide complex, “desperate” or in response to a crisis. In an extreme situation, continuous care without adequate formal care resources one spousal caregiver explained how formal care resources disproportionately burdens families exacting financial and were withheld until she secured the assistance of a physician: emotional consequences. One spousal caregiver described And she [nurse] said, “Is he [person with the devastating and costly toll on family capacity and dementia] in agony?” And I said, “Well, I don’t stability. Journal of Aging Research 5 I’ve gotahusbandathomewithdementia... I ... But it’s embarrassing, not for me so much, as cannot leave him. [My doctor asked me] “Well it is for him... but I had no one else to call! don’t you have any family?” [and] I said, “Well, A daughter caregiver further explicated the context of my family disowned me because I used them too home dementia care delivery, reflecting the belief that there much.” And, it’s true. was only a certain amount of care available: To complicate matters, the amount of formal home care I mean I know everybody is stretched to the available to persons with dementia and their families was limit...Even when you do request more care often based on different interpretations of “hours available” you are very fortunate if you get it, because and “need”, with opinions varying amongst family caregivers, there aren’t as many PSWs and nurses out there, in-home care providers, and case managers. A personal they can make a whole lot more money in the support worker responded to the question of increasing the hospitals, so trying to get a lot more care [is not hoursofhomesupport workersasameanstoprovide respite realistic]...we were very fortunate that we got for a spousal caregiver, what we did as far as I can tell. That [maximum amount of hours] would be 15 Furthermore, when familial care resources were limited hours in a week. And I don’t know if ... CCAC would allow it ... It is hard to tell. It’s because or became exhausted, the consequences to the person with that would be the maximum hours ... as far as I dementia were potentially life threatening, as the following quote from a spousal caregiver depicted: know, it’s 60 hours in a month. Ultimately, case managers were positioned to recom- ... She was in the hospital twice in two months mend the ‘appropriate’ amount and frequency of formal ...just because I couldn’t take care of her. The home care support, depending on their assessment of the sit- first time she was severely constipated, I don’t uation and the degree of latitude granted by their employer. know!? She was only there for a day. And then Although most case managers conveyed that they followed a the second time, she hadn’t eaten ... and [was] ‘standardized approach’ in the allocation of available formal not drinking and she got dehydrated. home care resources, others reported that this was sometimes In addition to providing the vast majority of day-to-day negotiable, depending on the needs of the family. As one case care to the person with dementia, our findings indicated that manager explained: family caregivers also assumed a great deal of responsibility I’ll go out to a home and they’ll say “Oh, I for managing the care of people with dementia. One PSW know she [another family caregiver] gets three spoke of the coordination role a daughter played in caring afternoons a week to go out and play bingo.” for her mother, noting how this was the exception, as there ...then I kind of have to say, “Tell me what you were many others who were not resourced as well: feel you need.” Like...I’m not going to walk in But you know, even though her mom is living and tell you that you’re going to get twelve hours, independently...I think Jane [daughter] does it’s what you need to continue doing this. So spend a lot of time monitoring, controlling, again, there’s no hard fast rule. planning, setting up her mom’s appointments, The provision of formal home care resources for persons you probably heard about the appointments. with dementia and their family caregivers in a timely way She regularly goes to her dentist and her was also another challenge identified. There were health and optometrist and the hearing specialist and now safety consequences to families when formal care resources the dermatologist ... Jane is very particular were unavailable, especially during the evenings and/or about her mom’s health and taking her to weekends. A spousal caregiver recalled a situation in which appointments. (Pause). You see so many other she required the assistance of her landlord during the evening cases where that just doesn’t happen or where to clean up after a toileting accident: people have been parked in an apartment by themselves and say “Well mom manages best as I don’t know how it happened, but the walls, she can” and they just don’t manage. the toilet, everything was covered [in feces]. And he [person with dementia] is trying to get Some people with dementia were also aware of how down there, not telling me, trying to clean it their families provided and managed their care. One woman up. And of course he ends up with it all over remarked that her daughter coordinates her care which she him, his hands. So then he’s getting the taps. So finds helpful: disgusting (whispers)... It took [the land lord] an hour and a half to clean that bathroom, put She gives a lot ... just in her own way...Idon’t my laundry in for me, and I said to him, “Boy know how she remembers all those things said this is beyond the call of duty...And I really in that book... Well it’s quite a bit to remember. appreciate it.” He said, “Don’t worry about it” She’s gotta have everything just so! 6 Journal of Aging Research In summary, the approach to care resource management with things. At least I tried to get through. She’s was a supplemental model of care wherein formal home care very hard to get through to...she never seems to resources were positioned as finite and precious commodi- answer her phone... ties while family resources were viewed as “cost-effective” In another situation, the spousal caregiver felt it neces- and inexhaustible. Many families, however, did not have sary to make the drastic decision to move to another apart- the available resources, time or skills to assume the care ment building, so her husband could continue to receive care management of people with dementia living at home, and from the same home support worker when their “catchment yet, that was what was expected of them in view of the limited area” had been rezoned. As her daughter explained: formal care resources. Moreover the management of care resources, formal or familial, was particularly challenging if Bobby [PSW] seemed to be a real big help in the resources were inaccessible. our family and when his territory was, changed, my mother and father moved so that they could 4.2. Accessible Community Resources: Reality or Rhetoric? maintain support and not have to go to a new Although caregivers, providers, and case managers spoke person. Because she just did not want to lose that about the importance of accessing a variety of community support, and my dad seemed to respond to him. dementia care resources, many family members did not There was also a discrepancy between what case man- know which services existed or how to access them. Our agers said was accessible, and the care experiences of persons findings also identified many barriers that prevented existing with dementia and their families as they tried to access home services from being accessible, such as long waiting lists (e.g., and community care services. Interestingly, case managers respite), rigid eligibility criteria (e.g., home care support), described how they assisted caregivers in navigating the or cost of services (e.g., transportation, adult day care system to access services, which was in direct contrast to programs). family members’ stories of the difficulties they encountered Services were not only difficult to access in a timely man- and the lack of support they received. As one case manager ner, but were often transient or nonexistent. For instance, explained: many participants spoke about the need for accessing appropriate respite services, both in-home and within day As a case manager it’s my job to help programs. The case managers, however, claimed that the with system navigation, to help them access actual provision of respite was challenging because there was [resources/services], tell them what’s available, never enough respite to meet the needs of families when they but to let the caregiver make decisions as to actually need it. Therefore, it was not uncommon for families what they feel they need as they progress, and to have to book six months or more ahead of the time the to support them through this journey. service was required. One son spoke about the lack of access to appropriate, timely resources for this father (person with And yet, as a daughter caregiver elucidated, bringing dementia) at a time when his family needs were the greatest. support into the home was neither a transparent process, nor, at times, a user-friendly activity: ...I was there that summer and I do recall a lot of our hard times trying to get that extra help. ...If the support can be easily brought into... the Trying to increase the time for my father ....Like home then I think that is preferable than taking it would take a burden off and then she [mother] a person out of the home...I don’t think there could do some of the stuff that needed to be is any comparison ... and when I say easy [to done around the apartment... Ican tell youif, navigate the system], I also mean like just the there waseveratime whereyou need alot of process itself who—who to call, how to do it and help, that was it ....I think that was a really bad not make it a challenge or a huge difficulty for example of how the system [didn’t work]... I the family or the caregiver. don’t think it worked great at all. When formal care services were provided in a stan- Accessing care resources in a timely way is also compro- dardized and regimented way, they were often described as mised by systemic barriers, such as the hierarchal structure of inadequate and substandard. Older adults and their families the home care system, busy caseloads, and infrequent contact struggled to acquire additional, essential resources to fill between home care providers. For instance, if personal in the substantial gaps left by the formal system. Families support workers had any concerns or questions, they are who were without access to appropriate, timely home and instructed to contact their managers at their specific agency, community services were particularly vulnerable. As one who, in turn, contacted the CCAC case managers. For daughter caregiver described: example, one PSW encountered difficulties in contacting his case manager to discuss a proposed increase in his hours due You know that was an additional expense [house cleaning] and I couldn’t pay for it ...[So] now to deterioration in the health of the family caregiver. they come every 2nd week, so things like that, I leave her [agency manager] notes if I have house cleaning which seems to be really basic a concern, and sometimes I’ve even called her care, are huge ... help because it’s just that much Journal of Aging Research 7 time and energy that she [spousal caregiver] everybody with all of the sort of facilities and doesn’t have to spend on something you know, handicap services and everything. That would where she’s probably already exhausted. be great, but that’s just not a reality. Challenges in providing care are therefore exacerbated Those who could not afford to buy additional supports were also less likely to complain about substandard or inept when there is a constant risk that the resources presently in-home care for fear of not receiving any assistance. As one available will cease to be available or will become inadequate as dementia progresses. What may have been adequate at spousal caregiver explained: one point is no longer adequate at another. As one PSW You just aren’t comfortable saying it’s poor care explained: because I didn’t think I’d get anyone else...And I find they [family caregivers of persons with I couldn’t go with nothing...So it was, “hang in there”. dementia] need more help than they’re getting now whether it’s PSW hours or hours with the Thus, although the rhetoric of the system of home nurse or some type of a counselor going in there health care suggests that resources essential to quality home assessing situations more often... More people based dementia care are universally accessible to persons could be kept out of institutions if they had with dementia and their families, unfortunately, our findings a little bit more home help... more resources, illuminate that this assumption is more rhetoric than reality. more people watching, more people, some sort of a method where people are on top of the situation more. 4.3. Diminishing Care Resources-Increasing Care Needs. The final theme reflects the temporal nature of care resources, There was also a sense of collective resignation amongst whereby diminishing care resources occurred, while care families, providers, and case managers that the current needs are simultaneously increasing. The adequacy of dementia home care system was the “best it can be.” One case resources was often assessed on what types of formal and manager described her sense of powerless: familial care resources were available in the past, and if they met the current needs of the person with dementia, I think when I first started out as a case without adequate provision for future care. As a son caregiver manager, especially with dementia care patients, clarified: I really had to learn that you should let go and sometimes things will just be the way they She [mother, caregiver of father] has Mark are...you can only do so much. I call it “crash [PSW] here, and she’s paying [a housekeeper] and burn”. If somebody is going to crash and to come in and take care of the basic stuff.So, burn, it’s going to happen and there’s only so as long as those things remain and everything much you can do. That was a hard thing to let stays the same, then those would be the key com- go of, because we like to help, you know, we like ponents to make it work. If those disappeared, to fix, but some things, we can’t fix. then I think it would...throw her out of whack, actually. I mean, I know that I can’t keep coming These words reflected an implicit assumption that the in here every day. formal care system is there to “help” families who do not or cannot provide the bulk of care for persons with dementia. The preceding quotation illustrates how formal care This reinforces the notion that the care of older adults in the resources needed to be monitored on an ongoing basis community is a family issue, instead of being viewed, at least because the demands of care as well as the familial resources in part, as a system failure that requires a different approach often change over time with the progression of the disease. to dementia home care. Spousal and adult child caregivers may become physically and emotionally depleted, and financial resources may run low. Therefore, given the cumulative effects of dementia care 5. Discussion giving, the same level of resources and services may be no Dementia home care was portrayed by persons with demen- longer adequate or readily available. A daughter caregiver tia, caregivers, providers and case managers in nine dementia described this shift: care networks as three interrelated, dialectical themes: finite We, we’ve come to realize in the last year, that my formal care-inexhaustible familial care, accessible resources dad’s health has changed more significantly than rhetoric-inaccessible resources reality,and diminishing care it had previous to this last year and my mom’s resources-increasing care needs. The study findings suggest physical capability and mine...you know, we’re that unless familial and formal home care resources are not big strong people who can make sure he reconceptualized and managed differently in the future, the gets bathed properly and that kind of thing. We needs of persons with dementia and their family caregivers don’t have all the appropriate facilities. It would will be drastically compromised. The study findings reflect be great if we had all the money in the world the experiences of clients, family caregivers, and providers and we could build a big huge house to keep who were primarily white, Anglo-Saxon, and therefore, 8 Journal of Aging Research cannot be assumed to reflect the experiences of persons those they care for tends to receive low priority in the current from varied ethnic backgrounds. In spite of this limitation, policy culture. Despite the benefits of reducing family care these findings provide several insights for future directions burdens by providing available and accessible formal care in home care practice, policy, and research. [47], the expectation that families not only must, but also ought to cope with minimal if any formal care continues to exist in in a context of home care where the responsibility for 5.1. Relationships between Formal and Familial Care Systems. A home care system that depends so heavily on familial care continues to shift from the state to individual families. care should recognize families as indispensable partners in This expectation for family caregivers to deliver the bulk of dementia home care is not only shortsighted, but dementia home care, not resources to be exploited [30, 43]. Concerns that formal care services will drive out the unpaid unaffordable. As dementia rates continue to rise, the costs family care must also finally be put to rest because we know of providing care to persons with dementia living in the from this study and from others [35, 44] that this is not community warrant increased attention [9]. Offering choice the case. Indeed, study findings suggest that the abilities of on how to manage their care may both lower the costs families to sustain these high levels of care may well exceed of home care and enhance client independence [51, 52]. their resources in the future [45]. As Levine [46] aptly argues, Therefore, the current case management approach may “the ongoing push toward a health care system that uses potentially undermine both client and family involvement as well as position family caregivers in precarious financial public resources sparingly and family caregivers liberally” is no longer viable. However, as long as the sociocultural and emotional situations. More research on the economics assumption that family care resources are unlimited and of caregiving is necessary, not only to fully understand the financial and social costs incurred by families, but also to exploitable remains intact, policymakers will not likely view support for caregivers as a wise and prudent decision [47]. identify what supports families need today and in the future. Therefore, by reconceptualizing the relationship between To ensure adequate provision of formal care resources, formal and informal care systems to one that is collaborative however, equal attention must be paid to the recruitment rather than supplemental and potentially exploitive, we and retention of a strong home care workforce. The cur- rent shortage of home care workers is troubling [23, 26]. begin to open up possibilities to create a more equitable environment for dementia home care. Research efforts to understand the work issues and working Study findings also revealed that the taken-for-granted conditions of home support workers and nurses are critical in understanding human home care resources in the future. assumption of finite formal care and inexhaustible family care is particularly difficult for families with limited financial Furthermore, we need to better understand how to attract and familial care resources. Their energy and capacity to and retain these workers [12, 26, 46], as well as how to providecarebecamedepletedatthe time when family promote collaborative relationships between and among caregivers needed them the most—as their relative’s cognitive clients, families, home care workers, and managers if we hope ability progressively declined. While there are several clinical to address this issue in the future. In addition, a change assessment tools to measure caregiver burden [48], the from home care policies and practices that contribute to the family’s “capacity” to provide and sustain long-term home vulnerability of home care workers to ones that give them the recognition and remuneration they deserve is overdue [12]. care was rarely considered in our study. This finding suggests the need to change the current home care policy to one Thus, the identification and implementation of necessary in which case managers are allocated the time and tools to policy and practice changes can hopefully create a space for familial and formal caregivers, many of whom are women, to carefully and routinely assess the family’s capacity to provide dementia care over time, with the ultimate goal of deliv- begin to develop and enjoy a meaningful, collaborative care- ering individualized, comprehensive formal care services to giving relationship. Ultimately, the joint efforts by persons persons with dementia and their families, particularly in the with dementia, practitioners, family caregivers, and policy later stages of the disease. makers will lead to an improved and equitable relationship between formal and familial caregivers and the systems they Although the inequitable distribution between formal and familial care results in substantial costs to caregiv- represent. ing families [49], these financial expenditures were rarely acknowledged in this study, a finding that is consistent with 5.2. Accessibility of Home and Community Resources. Similar previous investigations [47, 50]. As the purse holders or to other studies [53], our findings illustrated that inequitable gate keepers of the system [38], the case managers focused access to formal care resources has contributed to the strain on the costs of formal care services, which were carefully that familial caregivers experience while trying to cope assessed and allocated according to the “medical needs” of with the demands of providing care. A consistent theme the client. Furthermore, the family caregiver, not the case in the research literature is that people who might benefit manager, tended to be the primary person who managed the from respite care do not use these services or only in care resources, but with limited or no authority to ensure small amounts [54]. The utilization of certain services is optimal care. In light of the study findings, it is not surprising due to many contributing factors, but amongst the most that caregiver burden is inherent in this supplementary care prevalent reasons are ones that were revealed in this study: model that overuses familial care resources to the point of family caregivers are not made aware that the services exhaustion. Unfortunately, improving formal care services in exist, and existing programs are inaccessible, inconvenient, ways that may enhance the quality of life of caregivers and or expensive [53]. This finding highlights the importance Journal of Aging Research 9 of families knowing the number of formal home care to prevent their need for costly specialized services and hours that are available to them, the need for a formal, premature institutionalization of the person with dementia targeted system of communication, and awareness/education or their caregivers [60]. Furthermore, if we hope to address programs for caregivers. Furthermore, formal care services the challenges of dementia home care in the future, it is based on symptoms and disability assessment are not always important to reorganize the ways in which home health related to an individual’s actual care needs. For instance, services are funded, organized, and delivered in Canada an individual with a moderate level of dementia may have [9, 50]. Funding must be provided so that there are necessary fewer unmet needs because they were able to be met by resources to enable home care programs that meet the long- their care environment, whereas a person receiving higher term needs of persons with dementia and their families. Just levels of assistance may have many of their needs left unmet as other provinces, jurisdictions, or nations that count on because of low levels of personalized care [55]. There were the home care system to alleviate acute resource constraints also marked differences with respect to resources within and must, the time has come to move beyond the current four available to the networks in our study, yet they were treated percent-funding formula of the health care budget allocated as though they have the same access to resources. As opposed to home care [61] and to adequately fund Canadian home to adult children, spousal caregivers may not have the same care programs [54]. resources such as health, information, and confidence, or As in other neoliberal states where austerity measures families who live in rural areas [56]. This study finding is reduce the resources available for social and health care, congruent with those of others who have raised concerns Canadians have witnessed in the last fifteen years the offload- about equitable access to home care services [50]. Thus, ing of once public social programs to mixed economies of flexible programs and services must be offered if the needs public, private, and for-profit welfare [62]. Major shifts in of all families are to be met, irrespective of their composition health care financing and home care reforms have led to or where they reside. fewer home care services at the same time that case managers Similar to Pratt et al. [57], we found that increasing access and direct care providers have larger case loads of clients to services involves considering the wider social context of with more complex needs. Study findings have illuminated a caregivers and their relationships with, among persons with common theme of competing priorities and little time, with dementia, other caregivers and professionals in order to more case managers negotiating the competing roles of advocate meaningfully understand issues of access. One model that and service gatekeeper. Similar to Aronson and Smith’s study takes social context into account is the integrated, continuing [62] of social service managers in southern Ontario, study care model as proposed by Forbes and Neufeld [58]. This findings illuminate the “quiet” resistance of case managers type of model is only likely to work, however, if it is and how they struggled to respond to the shrinking formal sufficiently flexible to accommodate the divergent needs of care resources available to them. Very few case managers persons with dementia and their caregivers in a heterogenous took on an active advocacy role in our study; however, they society. Rather than placing the onus on families to provide did not passively accept their situation in this restructured the vast majority of human resources, a preferred approach environment. Although the personal support workers and is to view the care of persons with dementia as care that managers talked about their limited abilities to respond to involves the equitable, not equal, distribution of resources. the structural inequities experienced by the family caregivers, Furthermore, integration of familial and formal care is a number of them employed certain strategies to ‘get around’ desirable only if it involves a genuine partnership between the perceived unjust practices and policies inherent in the those who provide care, and not just a blurring of their system. Therefore, it is important in future research to respective roles. According to Blustein [59], the family is explore the structural barriers that disable case managers a system of care whose values, attitudes, and practices and other home care workers in advocating for equitable distinguish it conceptually, ethically, and emotionally from home care practices that would enable aging in place in later other sorts of care relationships, and any “partnership” life. between the two systems which integrates the values of formal and family care should be one that recognizes and preserves these differences. In addition, there is a need 6. Conclusion to respect the differences, as well as the commonalities, between formal care and family care, otherwise no one is With the shrinking welfare state, the notion of optimal care well served. Therefore, a new home care model is needed has been replaced by discussions around whether services that not only includes persons living with dementia and are available/unavailable, accessible/inaccessible, and ade- their family caregivers as genuine partners in care, but also quate/inadequate; however, all three are interwoven such that embraces diversity, flexibility, real choice, and supportive without available and accessible services, services cannot be services, within the context of a national home care program considered adequate. Home-based dementia services must, [50, 54]. at the very least, provide care resources that are accessible and available in order to be considered adequate. As our findings 5.3. Organization and Delivery of Dementia Home Care illustrate, people who have the least amount of resources and Resources. Clearly, we need new ways to think about and the least amount of accessibility are the ones most struggling manage dementia home care resources. At the very least, with inadequate care resources. Consistent with Jenga, a families must receive the support services they require board game of balance, these networks are often teetering on 10 Journal of Aging Research the brink of collapse, and as long as they do not fall apart [12] L. S. Nugent, “Can’t they get anything better? Home support workers call for change,” Home Health Care Services Quarterly, then the resources are perceived to be adequate. This current vol. 26, no. 2, pp. 21–39, 2007. supplementary model of dementia home care is not only [13] J. Sims-Gould, K. Byrne, C. Craven, A. Martin-Matthews, unjust, but it is also not sustainable in the future. and J. 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Hindawi Publishing Corporation Journal of Aging Research Volume 2012, Article ID 590724, 11 pages doi:10.1155/2012/590724 Research Article 1 2 2 1 1 Catherine Ward-Griffin, Jodi Hall, Ryan DeForge, Oona St-Amant, Carol McWilliam, 1 3 4 Abram Oudshoorn, Dorothy Forbes, and Marita Klosek Arthur Labatt Family School of Nursing, Faculty of Health Sciences, University of Western Ontario (UWO), London, ON, Canada N6A 5C1 Health and Rehabilitation Sciences, Faculty of Health Science, UWO, ON, N6A 5C1, Canada Faculty of Nursing, University of Alberta, AB, T6G 2R3, Canada School of Health Studies, Faculty of Health Sciences, UWO, ON, N6A 5C1, Canada Correspondence should be addressed to Catherine Ward-Griffin, cwg@uwo.ca Received 13 June 2011; Accepted 5 September 2011 Academic Editor: Lindy Clemson Copyright © 2012 Catherine Ward-Griffin et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. With the number of people living with dementia expected to more than double within the next 25 years, the demand for dementia home care services will increase. In this critical ethnographic study, we drew upon interview and participant data with persons with dementia, family caregivers, in-home providers, and case managers in nine dementia care networks to examine the management of dementia home care resources. Three interrelated, dialectical themes were identified: (1) finite formal care-inexhaustible familial care, (2) accessible resources rhetoric-Iinaccessible resources reality, and (3) diminishing care resources-increasing care needs. The development of policies and practices that provide available, accessible,and appropriate resources, ensuring equitable,not necessarily equal, distribution of dementia care resources is required if we are to meet the goal of aging in place now and in the future. 1. Introduction and their familial and formal caregivers. Furthermore, lim- ited resources to implement and sustain a home care in- The number of people living with Alzheimer’s disease or frastructure [16] and a shift of chronic care to community related dementia (ADRD) is expected to more than double settings without the corresponding transfer of funds [17] within the next 25 years, affecting over 1.1 million Canadians compound the difficulties encountered. Although provincial and their families [1, 2]. Half of those with dementia live at government-funded home care agencies in Canada are man- home [3], and this proportion is increasing [4], especially dated to assess and coordinate the health care needs of amongst women [5]. Furthermore, families and friends are community-dwelling older adults with dementia, there is often the ones called upon to provide between 70%–90% of evidence that increasing caseloads among direct care pro- care [6] with adult children providing more care for their viders [13] and case managers [18]havenegativelyimpacted mothers than for their fathers. Clearly, the increasing number the quality of home care. of people with ADRD will inevitably affect both formal and In Ontario, 67% of formal home care has been pro- familial care for persons with ADRD who, on average, require care for approximately 8.5 years [7]. vided by personal support workers and 27% by nurses, many of whom assume the role of case manager [19]. Case The challenges of providing home care have been well documented. Lack of support for family caregivers [8–11], management, including assessment of client care needs and lack of recognition and poor working conditions of home service allocation, coordination, monitoring, and evaluation support workers [12, 13], early hospital-to-home discharge based on assessed need, is a major strategy for home care policy [14], and poor system coordination [15]are examples management. Case management of home-based dementia of the challenges faced by persons living with dementia care generally falls within one of three major models: (1) a 2 Journal of Aging Research brokerage model wherein case managers are charged with the the reservation of social work services for difficult cases responsibility of assessing the needs of clients, and based on [9]. While collaboration is typically sought by both formal these assessments, “decide, access, coordinate, monitor, and and familial caregivers, these individuals are situated in an control amounts of timeframes of resources and services” emotionally charged “intermediate” domain, a contested ar- [20, page 120]; (2) integrated service allocation and care ea between the public world of paid care and the private managed by teams of professional providers who work directly world of family care [10, 11]. Thus, alliances between formal with clients, sharing the responsibility and accountability and familial care providers in home care are often formed for the management of both care and service allocation; (3) under the guise of partnerships. consumer-managed care, directed by the clients themselves, Those studies that have explored home-based dementia where clients select different mixes of services to achieve what care services have focused on the relationships between they value [21]. All three models, however, typically rely on a family caregivers and home care providers [31–33], family range of human resources, which include family, friends, and caregivers’ expectations of providers [15], the use and satis- neighbours (informal network), as well as professional and faction with home-based service for persons with dementia paraprofessional services (formal network). [34], and the relationship between formal and informal care With the impending increase in the population of older systems [35]. In a mixed-method study, Forbes et al. [34] persons in Canada, the availability of these human health found that 39 family caregivers of persons with dementia resources to meet the growing demand for home care services identified availability and accessibility issues in seeking and is of rising concern to health care planners, policymakers, using formal home care and community services in three and other stakeholders [22, 23]. Furthermore, the need to provinces in Canada. The qualitative component of this both gain access to formal services and to sustain high study revealed challenges of service availability (e.g., lack of levels of care may well exceed families’ resources [24]. Con- community based dementia care) and accessibility (e.g., lack sequently, as demands for home care escalate and the number of system coordination), however, our understanding into of people living with dementia in the community increase, how the two care systems might “work together” in providing investigation into the management of dementia home care accessible and appropriate resources remains unclear. resources is critical if the goal of aging in place is to be Although the relationship between the informal and realized. formal care systems has been studied in a variety of settings, This article focuses on home-based dementia care from including home care [36–38], there are inconsistent findings the perspective of persons with dementia, their family mem- about whether they substitute or complement one another. bers, and home care providers, situating these experiences For instance, Zhu et al. [35] found that the utilization within a sociocultural context. In particular, we examined of formal home care and informal care was not influ- the relational experiences of clients, family caregivers, and enced by the use of the other, and yet, there is empirical providers involved in dementia home care, and the contex- evidence that the two care systems are complementary tual factors that influence the formation and negotiation of [36, 37]. The theoretical basis and empirical support for those relationships, with the ultimate aim of identifying the both these approaches to understanding the link between necessary policy and practice changes to improve dementia formal and informal care systems are problematic [38]. First, home care. Four integral relational care processes emerged the “partner relationship” between paid and unpaid care from our findings: reifying care norms, managing care providers is espoused primarily by formal service providers resources, making care decisions, and evaluating care practice. and administrators as a way to limit financial expenditures of This paper focuses on one relational care process, managing formal home services. In other words, the complementarity care resources. of the two systems is less compatible than is often assumed. Second, the analysis that guides most empirical studies on the relationship between formal and informal care systems 2. Literture Review is premised on the gendered assumption that the two are Previous research on home support has identified that distinct entities, with family care rarely depicted as “care one of the challenges for home care workers is forming work”. This view not only simplifies the relationship between and maintaining relationships with clients and their family formal and informal caregiving, but it also fails to capture the specific commonalities and discerning differences between caregivers [25, 26]. Although the formal sector relies heavily on familial caregivers (families and friends) to provide the them. Thus, the differences between the two care systems vast majority of care to persons with dementia, there has with respect to power, status, authority, and resources are been little investigation of the relationship between the rarely considered in these studies. One exception, however, formal and informal home care networks. The few studies was Ward-Griffin and Marshall [38] who found home care that have been conducted on home care [9, 27–30]have nurses and family caregivers of older chronically ill elders revealed an “uneasy alliance” and power struggles between living in Canada engaged in a bidirectional labour process the family caregivers and providers. Analysis of focus groups of “work transfer”, one that depended on the “free” labour of family caregivers. Although this particular study sheds of 46 American home care clinicians revealed five inherent conflicts affecting family caregiver-clinician interactions: light on the complexity and interconnectedness of formal- unrecognized family involvement; competing priorities and informal care and points to the need to conceptualize eld- ercare as work, regardless of who does it, it did not focus on little time; lack of appropriate services to meet family needs; dual obligation of patient advocate and service gatekeeper; dementia home care. Journal of Aging Research 3 There is also a need to examine the sociopolitical context in the study, clients with Alzheimer’s disease or related of dementia home care because it permeates care systems at dementia had to speak and understand English, be at least all levels [39]. For instance, a family member’s “decision” to 60 years of age or older, and have at least one family member provide care to persons with dementia and to use formal or close friend providing regular care (minimum of 4 hours care services depends on a number of sociocultural factors, of direct or indirect care per week). Once the client and fam- such as the availability and cost of these services [40]. Family ily caregiver(s) agreed to participate in the study, the home caregivers of persons with dementia also face a number of care worker(s) assigned to their care, for a minimum of challenges in obtaining adequate, appropriate, consistent, three home visits, was invited to participate in the study by a flexible, and sufficienthomecareservices[33, 34]. Since member of the research team. the conceptualization and availability of both informal and formal resources are profoundly shaped by the beliefs, values, 3.3. Sample. The total sample was comprised of nine net- practices, and policies within the current home care context, works, which included nine older adults with dementia, further investigation is warranted. 25 family caregivers, 10 formal healthcare providers, and In summary, there is limited research that examines the 7 CCAC case managers. The nine persons with dementia sociopolitical context of dementia home care. Given the (PWD), four of whom were male, ranged in age from 75 to increasing use of home care services, the projected decreasing 91 (average 83.7 years). All but one were married, one was availability of family caregivers and the increasing number of a widow, three had postsecondary education, one had only persons with dementia health care practitioners and policy primary education, and the remaining PWD had secondary makers would benefit from an increased understanding of education. Standardized Mini Mental State Exam (SMMSE) the perceptions and experiences of persons with dementia, scores ranged from 10/30 to 26/30, averaging 15.8 (n = 5; and their familial and formal care providers with regards to four scores were not obtained due to participants’ relocation, the management of home care resources. refusal, or confusion). All PWD and their families were white and of Anglo-Saxon descent. Of the 25 family members who 3. Study Design were spouses (n = 5, 3 of whom were male), the average age was 78.8 years. Among the adult children (n = 20, 15 of The purpose of this critical ethnography was to develop a whom were female), the average age was 50.1 years. All but better understanding of home-based dementia care within a three adult children worked full time. sociocultural context, shedding light in particular on those All nine networks were receiving formal home care sociocultural, taken-for-granted values, beliefs, and practices support from personal support workers (PSWs). At least one embedded in the dementia home care culture. PSW was recruited for each network (except network 9); for networks 3 and 8, two PSWs were recruited. In total, ten PSWs were recruited, two of whom were male. The average 3.1. Setting. As in other Canadian provinces, home care in age of the PSWs was 52.8 years. Four worked full time, the Ontario entails the delivery of a wide range of health services others worked part time or on a casual basis. All seven home to people of all ages who may be recovering from an illness, care case managers were female and of Anglo-Saxon decent. disabled or terminally ill. The central agency through which Their ages ranged from 45 to 57 (average: 50.9) years, and families access community care begins to manage a “case” they had worked between 4 and 20 (average: 9.4) years as a by triaging it into one of five care domains: acute care, case manager. Four of the managers coordinated caseloads rehabilitation, maintenance, long stay supportive, and end- that were primarily urban (i.e., within a large city in southern of-life care; seniors with dementia are usually classified into Ontario); the other three case managers provided services for maintenance or long-stay supportive categories. Thereafter, those living in the surrounding counties (i.e., small towns care planning begins with a standardized assessment of the and rural settings). person with dementia’s functional independence, couched within a goal-oriented model of client empowerment that aims to match services with assessments and with client 3.4. Data Collection. A total of 52 in-depth, semistructured preferences and strengths. As such, individuals receiving interviews were conducted with clients, family caregivers, home care may be provided with medical, nursing, social, or and PSWs. Each participant was interviewed two to three- therapeutic treatment or with assistance with essential activ- times over a period of 19 months (January 2007–July ities of daily living. The fiscal constraints that characterize 2008). At the beginning of the initial interview, participants the province of Ontario’s health care, however, preclude the were asked to complete a brief demographic questionnaire, provision of assistance with instrumental activities, such as and for each person with dementia, an SMMSE score was housework, shopping, or meal preparation. obtained to describe the level of cognitive impairment. With the exception of the focus group interview with the 3.2. Recruitment. Case managers of the local Commu- case managers (which was conducted at the local CCAC nity Care Access Centre (CCAC) and other community office) and two interviews conducted by phone, all the in- collaborators served as key informants assisting with the terviews were conducted in the home of the client and/or identification and recruitment of potential procedures. All family caregiver. After each interview, researchers dic- persons involved in the “caregiving network” of nine persons tated full field notes about their observations, perceptions, with dementia were requited for this study. To be included insights, nuances of communication, nonverbal expressions, 4 Journal of Aging Research caregiving behaviors, and interactions between and among know.” “Well when he gets in agony, call me all participants [41]. back.” And I said, “I beg your pardon?” So I called the neurosurgeon... The gal on the desk answered it but she gave the phone to him, 3.5. Data Analysis. Following the guidelines for data analysis and he said, “What’s going on?” and I said, of Lofland et al. [42], emerging initial codes were identified “Thomas’s catheter is plugged... and the [nurse] from the transcripts and the field notes. Memos were used as told me that I was to wait until he was in pure supplementary notes and background information to inform agony, and then call her back.” And he said, the analysis. After an iterative process of refining the initial “I beg your pardon? Do you have her phone codes, focused codes were applied to “clean” transcripts in an number?” And I said, “Yes I have.” “Well you give attempt to identify gaps or missing codes. The final analysis it to me. I’ll get back to you.” Within 10 minutes steps involved the development and refinement of the major he called back... and he said, “Sit back and themes, the identification of phrases that most accurately relax...she’s coming in.” But that kinda thing, illustrated these themes, and diagramming, a process that you know? Who needs it? Nobody! facilitated an understanding of how the focused codes related to each other in order to conceptualize the larger picture [42]. Furthermore, many family members reported feeling unheard when they expressed concerns or an inability to 4. Findings continue providing care. Another spousal caregiver stated that she only received “help” from the formal care system Based on our analysis, three interrelated, dialectical themes when she threatened to stop providing unpaid care: were identified: (1) finite formal care-inexhaustible familial care,(2) accessible resources rhetoric-inaccessible resources My breathing has been terrible since I had my reality,and (3) diminishing care resources-increasing care heart attack ... andI’vebeenbegging forhelp needs. Although the management of dementia home care ... Nobody listened until now. And Jill [case resources is complex, study findings suggest that the lack of manager] called me when I was trying to fix available, accessible, and appropriate formal care resources supper and I couldn’t breathe. And she said, has ultimately contributed to the failure to provide optimal “Joan, you don’t sound very good!” I said, “No home-based dementia care. ...Sorry Jill. I’m ready to give it up...Ican’t do this anymore. This is just too hard to do.” [She 4.1. Finite Formal Care—Inexhaustible Familial Care. Study responded] “Oh no! Don’t do that. No, no don’t findings revealed that the resource allocation by the formal do that!” So I received extra help... But it makes sector depended heavily on families and friends to provide you feel you are on your knees, all the time the bulk of care and assistance to persons with dementia, and begging for some help. only as a last resort, were formal care resources utilized to supplement this care. The notion of formal care resources as Despite the potential for “caregiver burnout”, case managers scarce commodities produced, by default, a view that familial were required to distribute formal care resources within the care resources were abundant. Furthermore, the need for current fiscal constraints of home care. This approach to formal care assistance tended to be based on the assumption dementia home care limited them in providing adequate that family members were not only capable, but (ought to be) support, even when familial care is exhausted. As one case willing to provide care to members with dementia. Although manager reported: all study participants addressed this “unspoken” reality that families provided the necessary care first and foremost, case Like that caregiver burnout, drop dead thing, managers were positioned to actively cultivate the availability the back-up plan for [the care of] these memory of familial care resources. As one case manager explained: clients, there isn’t one. So I mean I think that’s how we can do it [alleviate caregiver I have a new demented person and the first burden]...four hours a week is what we’re going thing that I did is to try to rally every family to provide and we do whatever we can to make member... and gather as much family or friends it work. that you can to start off with and focus on and get as much care in there as needed. Using a supplementary approach to managing dementia care resources, however, did not alleviate caregiver burden Care resources provided by the formal sector were viewed in this study. Instead, the provision of care to persons with as supplementary “help” to the family, being made most dementia over long periods of time exhausted the capacity of readily available when the family member was viewed as most families. Expectations of families to provide complex, “desperate” or in response to a crisis. In an extreme situation, continuous care without adequate formal care resources one spousal caregiver explained how formal care resources disproportionately burdens families exacting financial and were withheld until she secured the assistance of a physician: emotional consequences. One spousal caregiver described And she [nurse] said, “Is he [person with the devastating and costly toll on family capacity and dementia] in agony?” And I said, “Well, I don’t stability. Journal of Aging Research 5 I’ve gotahusbandathomewithdementia... I ... But it’s embarrassing, not for me so much, as cannot leave him. [My doctor asked me] “Well it is for him... but I had no one else to call! don’t you have any family?” [and] I said, “Well, A daughter caregiver further explicated the context of my family disowned me because I used them too home dementia care delivery, reflecting the belief that there much.” And, it’s true. was only a certain amount of care available: To complicate matters, the amount of formal home care I mean I know everybody is stretched to the available to persons with dementia and their families was limit...Even when you do request more care often based on different interpretations of “hours available” you are very fortunate if you get it, because and “need”, with opinions varying amongst family caregivers, there aren’t as many PSWs and nurses out there, in-home care providers, and case managers. A personal they can make a whole lot more money in the support worker responded to the question of increasing the hospitals, so trying to get a lot more care [is not hoursofhomesupport workersasameanstoprovide respite realistic]...we were very fortunate that we got for a spousal caregiver, what we did as far as I can tell. That [maximum amount of hours] would be 15 Furthermore, when familial care resources were limited hours in a week. And I don’t know if ... CCAC would allow it ... It is hard to tell. It’s because or became exhausted, the consequences to the person with that would be the maximum hours ... as far as I dementia were potentially life threatening, as the following quote from a spousal caregiver depicted: know, it’s 60 hours in a month. Ultimately, case managers were positioned to recom- ... She was in the hospital twice in two months mend the ‘appropriate’ amount and frequency of formal ...just because I couldn’t take care of her. The home care support, depending on their assessment of the sit- first time she was severely constipated, I don’t uation and the degree of latitude granted by their employer. know!? She was only there for a day. And then Although most case managers conveyed that they followed a the second time, she hadn’t eaten ... and [was] ‘standardized approach’ in the allocation of available formal not drinking and she got dehydrated. home care resources, others reported that this was sometimes In addition to providing the vast majority of day-to-day negotiable, depending on the needs of the family. As one case care to the person with dementia, our findings indicated that manager explained: family caregivers also assumed a great deal of responsibility I’ll go out to a home and they’ll say “Oh, I for managing the care of people with dementia. One PSW know she [another family caregiver] gets three spoke of the coordination role a daughter played in caring afternoons a week to go out and play bingo.” for her mother, noting how this was the exception, as there ...then I kind of have to say, “Tell me what you were many others who were not resourced as well: feel you need.” Like...I’m not going to walk in But you know, even though her mom is living and tell you that you’re going to get twelve hours, independently...I think Jane [daughter] does it’s what you need to continue doing this. So spend a lot of time monitoring, controlling, again, there’s no hard fast rule. planning, setting up her mom’s appointments, The provision of formal home care resources for persons you probably heard about the appointments. with dementia and their family caregivers in a timely way She regularly goes to her dentist and her was also another challenge identified. There were health and optometrist and the hearing specialist and now safety consequences to families when formal care resources the dermatologist ... Jane is very particular were unavailable, especially during the evenings and/or about her mom’s health and taking her to weekends. A spousal caregiver recalled a situation in which appointments. (Pause). You see so many other she required the assistance of her landlord during the evening cases where that just doesn’t happen or where to clean up after a toileting accident: people have been parked in an apartment by themselves and say “Well mom manages best as I don’t know how it happened, but the walls, she can” and they just don’t manage. the toilet, everything was covered [in feces]. And he [person with dementia] is trying to get Some people with dementia were also aware of how down there, not telling me, trying to clean it their families provided and managed their care. One woman up. And of course he ends up with it all over remarked that her daughter coordinates her care which she him, his hands. So then he’s getting the taps. So finds helpful: disgusting (whispers)... It took [the land lord] an hour and a half to clean that bathroom, put She gives a lot ... just in her own way...Idon’t my laundry in for me, and I said to him, “Boy know how she remembers all those things said this is beyond the call of duty...And I really in that book... Well it’s quite a bit to remember. appreciate it.” He said, “Don’t worry about it” She’s gotta have everything just so! 6 Journal of Aging Research In summary, the approach to care resource management with things. At least I tried to get through. She’s was a supplemental model of care wherein formal home care very hard to get through to...she never seems to resources were positioned as finite and precious commodi- answer her phone... ties while family resources were viewed as “cost-effective” In another situation, the spousal caregiver felt it neces- and inexhaustible. Many families, however, did not have sary to make the drastic decision to move to another apart- the available resources, time or skills to assume the care ment building, so her husband could continue to receive care management of people with dementia living at home, and from the same home support worker when their “catchment yet, that was what was expected of them in view of the limited area” had been rezoned. As her daughter explained: formal care resources. Moreover the management of care resources, formal or familial, was particularly challenging if Bobby [PSW] seemed to be a real big help in the resources were inaccessible. our family and when his territory was, changed, my mother and father moved so that they could 4.2. Accessible Community Resources: Reality or Rhetoric? maintain support and not have to go to a new Although caregivers, providers, and case managers spoke person. Because she just did not want to lose that about the importance of accessing a variety of community support, and my dad seemed to respond to him. dementia care resources, many family members did not There was also a discrepancy between what case man- know which services existed or how to access them. Our agers said was accessible, and the care experiences of persons findings also identified many barriers that prevented existing with dementia and their families as they tried to access home services from being accessible, such as long waiting lists (e.g., and community care services. Interestingly, case managers respite), rigid eligibility criteria (e.g., home care support), described how they assisted caregivers in navigating the or cost of services (e.g., transportation, adult day care system to access services, which was in direct contrast to programs). family members’ stories of the difficulties they encountered Services were not only difficult to access in a timely man- and the lack of support they received. As one case manager ner, but were often transient or nonexistent. For instance, explained: many participants spoke about the need for accessing appropriate respite services, both in-home and within day As a case manager it’s my job to help programs. The case managers, however, claimed that the with system navigation, to help them access actual provision of respite was challenging because there was [resources/services], tell them what’s available, never enough respite to meet the needs of families when they but to let the caregiver make decisions as to actually need it. Therefore, it was not uncommon for families what they feel they need as they progress, and to have to book six months or more ahead of the time the to support them through this journey. service was required. One son spoke about the lack of access to appropriate, timely resources for this father (person with And yet, as a daughter caregiver elucidated, bringing dementia) at a time when his family needs were the greatest. support into the home was neither a transparent process, nor, at times, a user-friendly activity: ...I was there that summer and I do recall a lot of our hard times trying to get that extra help. ...If the support can be easily brought into... the Trying to increase the time for my father ....Like home then I think that is preferable than taking it would take a burden off and then she [mother] a person out of the home...I don’t think there could do some of the stuff that needed to be is any comparison ... and when I say easy [to done around the apartment... Ican tell youif, navigate the system], I also mean like just the there waseveratime whereyou need alot of process itself who—who to call, how to do it and help, that was it ....I think that was a really bad not make it a challenge or a huge difficulty for example of how the system [didn’t work]... I the family or the caregiver. don’t think it worked great at all. When formal care services were provided in a stan- Accessing care resources in a timely way is also compro- dardized and regimented way, they were often described as mised by systemic barriers, such as the hierarchal structure of inadequate and substandard. Older adults and their families the home care system, busy caseloads, and infrequent contact struggled to acquire additional, essential resources to fill between home care providers. For instance, if personal in the substantial gaps left by the formal system. Families support workers had any concerns or questions, they are who were without access to appropriate, timely home and instructed to contact their managers at their specific agency, community services were particularly vulnerable. As one who, in turn, contacted the CCAC case managers. For daughter caregiver described: example, one PSW encountered difficulties in contacting his case manager to discuss a proposed increase in his hours due You know that was an additional expense [house cleaning] and I couldn’t pay for it ...[So] now to deterioration in the health of the family caregiver. they come every 2nd week, so things like that, I leave her [agency manager] notes if I have house cleaning which seems to be really basic a concern, and sometimes I’ve even called her care, are huge ... help because it’s just that much Journal of Aging Research 7 time and energy that she [spousal caregiver] everybody with all of the sort of facilities and doesn’t have to spend on something you know, handicap services and everything. That would where she’s probably already exhausted. be great, but that’s just not a reality. Challenges in providing care are therefore exacerbated Those who could not afford to buy additional supports were also less likely to complain about substandard or inept when there is a constant risk that the resources presently in-home care for fear of not receiving any assistance. As one available will cease to be available or will become inadequate as dementia progresses. What may have been adequate at spousal caregiver explained: one point is no longer adequate at another. As one PSW You just aren’t comfortable saying it’s poor care explained: because I didn’t think I’d get anyone else...And I find they [family caregivers of persons with I couldn’t go with nothing...So it was, “hang in there”. dementia] need more help than they’re getting now whether it’s PSW hours or hours with the Thus, although the rhetoric of the system of home nurse or some type of a counselor going in there health care suggests that resources essential to quality home assessing situations more often... More people based dementia care are universally accessible to persons could be kept out of institutions if they had with dementia and their families, unfortunately, our findings a little bit more home help... more resources, illuminate that this assumption is more rhetoric than reality. more people watching, more people, some sort of a method where people are on top of the situation more. 4.3. Diminishing Care Resources-Increasing Care Needs. The final theme reflects the temporal nature of care resources, There was also a sense of collective resignation amongst whereby diminishing care resources occurred, while care families, providers, and case managers that the current needs are simultaneously increasing. The adequacy of dementia home care system was the “best it can be.” One case resources was often assessed on what types of formal and manager described her sense of powerless: familial care resources were available in the past, and if they met the current needs of the person with dementia, I think when I first started out as a case without adequate provision for future care. As a son caregiver manager, especially with dementia care patients, clarified: I really had to learn that you should let go and sometimes things will just be the way they She [mother, caregiver of father] has Mark are...you can only do so much. I call it “crash [PSW] here, and she’s paying [a housekeeper] and burn”. If somebody is going to crash and to come in and take care of the basic stuff.So, burn, it’s going to happen and there’s only so as long as those things remain and everything much you can do. That was a hard thing to let stays the same, then those would be the key com- go of, because we like to help, you know, we like ponents to make it work. If those disappeared, to fix, but some things, we can’t fix. then I think it would...throw her out of whack, actually. I mean, I know that I can’t keep coming These words reflected an implicit assumption that the in here every day. formal care system is there to “help” families who do not or cannot provide the bulk of care for persons with dementia. The preceding quotation illustrates how formal care This reinforces the notion that the care of older adults in the resources needed to be monitored on an ongoing basis community is a family issue, instead of being viewed, at least because the demands of care as well as the familial resources in part, as a system failure that requires a different approach often change over time with the progression of the disease. to dementia home care. Spousal and adult child caregivers may become physically and emotionally depleted, and financial resources may run low. Therefore, given the cumulative effects of dementia care 5. Discussion giving, the same level of resources and services may be no Dementia home care was portrayed by persons with demen- longer adequate or readily available. A daughter caregiver tia, caregivers, providers and case managers in nine dementia described this shift: care networks as three interrelated, dialectical themes: finite We, we’ve come to realize in the last year, that my formal care-inexhaustible familial care, accessible resources dad’s health has changed more significantly than rhetoric-inaccessible resources reality,and diminishing care it had previous to this last year and my mom’s resources-increasing care needs. The study findings suggest physical capability and mine...you know, we’re that unless familial and formal home care resources are not big strong people who can make sure he reconceptualized and managed differently in the future, the gets bathed properly and that kind of thing. We needs of persons with dementia and their family caregivers don’t have all the appropriate facilities. It would will be drastically compromised. The study findings reflect be great if we had all the money in the world the experiences of clients, family caregivers, and providers and we could build a big huge house to keep who were primarily white, Anglo-Saxon, and therefore, 8 Journal of Aging Research cannot be assumed to reflect the experiences of persons those they care for tends to receive low priority in the current from varied ethnic backgrounds. In spite of this limitation, policy culture. Despite the benefits of reducing family care these findings provide several insights for future directions burdens by providing available and accessible formal care in home care practice, policy, and research. [47], the expectation that families not only must, but also ought to cope with minimal if any formal care continues to exist in in a context of home care where the responsibility for 5.1. Relationships between Formal and Familial Care Systems. A home care system that depends so heavily on familial care continues to shift from the state to individual families. care should recognize families as indispensable partners in This expectation for family caregivers to deliver the bulk of dementia home care is not only shortsighted, but dementia home care, not resources to be exploited [30, 43]. Concerns that formal care services will drive out the unpaid unaffordable. As dementia rates continue to rise, the costs family care must also finally be put to rest because we know of providing care to persons with dementia living in the from this study and from others [35, 44] that this is not community warrant increased attention [9]. Offering choice the case. Indeed, study findings suggest that the abilities of on how to manage their care may both lower the costs families to sustain these high levels of care may well exceed of home care and enhance client independence [51, 52]. their resources in the future [45]. As Levine [46] aptly argues, Therefore, the current case management approach may “the ongoing push toward a health care system that uses potentially undermine both client and family involvement as well as position family caregivers in precarious financial public resources sparingly and family caregivers liberally” is no longer viable. However, as long as the sociocultural and emotional situations. More research on the economics assumption that family care resources are unlimited and of caregiving is necessary, not only to fully understand the financial and social costs incurred by families, but also to exploitable remains intact, policymakers will not likely view support for caregivers as a wise and prudent decision [47]. identify what supports families need today and in the future. Therefore, by reconceptualizing the relationship between To ensure adequate provision of formal care resources, formal and informal care systems to one that is collaborative however, equal attention must be paid to the recruitment rather than supplemental and potentially exploitive, we and retention of a strong home care workforce. The cur- rent shortage of home care workers is troubling [23, 26]. begin to open up possibilities to create a more equitable environment for dementia home care. Research efforts to understand the work issues and working Study findings also revealed that the taken-for-granted conditions of home support workers and nurses are critical in understanding human home care resources in the future. assumption of finite formal care and inexhaustible family care is particularly difficult for families with limited financial Furthermore, we need to better understand how to attract and familial care resources. Their energy and capacity to and retain these workers [12, 26, 46], as well as how to providecarebecamedepletedatthe time when family promote collaborative relationships between and among caregivers needed them the most—as their relative’s cognitive clients, families, home care workers, and managers if we hope ability progressively declined. While there are several clinical to address this issue in the future. In addition, a change assessment tools to measure caregiver burden [48], the from home care policies and practices that contribute to the family’s “capacity” to provide and sustain long-term home vulnerability of home care workers to ones that give them the recognition and remuneration they deserve is overdue [12]. care was rarely considered in our study. This finding suggests the need to change the current home care policy to one Thus, the identification and implementation of necessary in which case managers are allocated the time and tools to policy and practice changes can hopefully create a space for familial and formal caregivers, many of whom are women, to carefully and routinely assess the family’s capacity to provide dementia care over time, with the ultimate goal of deliv- begin to develop and enjoy a meaningful, collaborative care- ering individualized, comprehensive formal care services to giving relationship. Ultimately, the joint efforts by persons persons with dementia and their families, particularly in the with dementia, practitioners, family caregivers, and policy later stages of the disease. makers will lead to an improved and equitable relationship between formal and familial caregivers and the systems they Although the inequitable distribution between formal and familial care results in substantial costs to caregiv- represent. ing families [49], these financial expenditures were rarely acknowledged in this study, a finding that is consistent with 5.2. Accessibility of Home and Community Resources. Similar previous investigations [47, 50]. As the purse holders or to other studies [53], our findings illustrated that inequitable gate keepers of the system [38], the case managers focused access to formal care resources has contributed to the strain on the costs of formal care services, which were carefully that familial caregivers experience while trying to cope assessed and allocated according to the “medical needs” of with the demands of providing care. A consistent theme the client. Furthermore, the family caregiver, not the case in the research literature is that people who might benefit manager, tended to be the primary person who managed the from respite care do not use these services or only in care resources, but with limited or no authority to ensure small amounts [54]. The utilization of certain services is optimal care. In light of the study findings, it is not surprising due to many contributing factors, but amongst the most that caregiver burden is inherent in this supplementary care prevalent reasons are ones that were revealed in this study: model that overuses familial care resources to the point of family caregivers are not made aware that the services exhaustion. Unfortunately, improving formal care services in exist, and existing programs are inaccessible, inconvenient, ways that may enhance the quality of life of caregivers and or expensive [53]. This finding highlights the importance Journal of Aging Research 9 of families knowing the number of formal home care to prevent their need for costly specialized services and hours that are available to them, the need for a formal, premature institutionalization of the person with dementia targeted system of communication, and awareness/education or their caregivers [60]. Furthermore, if we hope to address programs for caregivers. Furthermore, formal care services the challenges of dementia home care in the future, it is based on symptoms and disability assessment are not always important to reorganize the ways in which home health related to an individual’s actual care needs. For instance, services are funded, organized, and delivered in Canada an individual with a moderate level of dementia may have [9, 50]. Funding must be provided so that there are necessary fewer unmet needs because they were able to be met by resources to enable home care programs that meet the long- their care environment, whereas a person receiving higher term needs of persons with dementia and their families. Just levels of assistance may have many of their needs left unmet as other provinces, jurisdictions, or nations that count on because of low levels of personalized care [55]. There were the home care system to alleviate acute resource constraints also marked differences with respect to resources within and must, the time has come to move beyond the current four available to the networks in our study, yet they were treated percent-funding formula of the health care budget allocated as though they have the same access to resources. As opposed to home care [61] and to adequately fund Canadian home to adult children, spousal caregivers may not have the same care programs [54]. resources such as health, information, and confidence, or As in other neoliberal states where austerity measures families who live in rural areas [56]. This study finding is reduce the resources available for social and health care, congruent with those of others who have raised concerns Canadians have witnessed in the last fifteen years the offload- about equitable access to home care services [50]. Thus, ing of once public social programs to mixed economies of flexible programs and services must be offered if the needs public, private, and for-profit welfare [62]. Major shifts in of all families are to be met, irrespective of their composition health care financing and home care reforms have led to or where they reside. fewer home care services at the same time that case managers Similar to Pratt et al. [57], we found that increasing access and direct care providers have larger case loads of clients to services involves considering the wider social context of with more complex needs. Study findings have illuminated a caregivers and their relationships with, among persons with common theme of competing priorities and little time, with dementia, other caregivers and professionals in order to more case managers negotiating the competing roles of advocate meaningfully understand issues of access. One model that and service gatekeeper. Similar to Aronson and Smith’s study takes social context into account is the integrated, continuing [62] of social service managers in southern Ontario, study care model as proposed by Forbes and Neufeld [58]. This findings illuminate the “quiet” resistance of case managers type of model is only likely to work, however, if it is and how they struggled to respond to the shrinking formal sufficiently flexible to accommodate the divergent needs of care resources available to them. Very few case managers persons with dementia and their caregivers in a heterogenous took on an active advocacy role in our study; however, they society. Rather than placing the onus on families to provide did not passively accept their situation in this restructured the vast majority of human resources, a preferred approach environment. Although the personal support workers and is to view the care of persons with dementia as care that managers talked about their limited abilities to respond to involves the equitable, not equal, distribution of resources. the structural inequities experienced by the family caregivers, Furthermore, integration of familial and formal care is a number of them employed certain strategies to ‘get around’ desirable only if it involves a genuine partnership between the perceived unjust practices and policies inherent in the those who provide care, and not just a blurring of their system. Therefore, it is important in future research to respective roles. According to Blustein [59], the family is explore the structural barriers that disable case managers a system of care whose values, attitudes, and practices and other home care workers in advocating for equitable distinguish it conceptually, ethically, and emotionally from home care practices that would enable aging in place in later other sorts of care relationships, and any “partnership” life. between the two systems which integrates the values of formal and family care should be one that recognizes and preserves these differences. In addition, there is a need 6. Conclusion to respect the differences, as well as the commonalities, between formal care and family care, otherwise no one is With the shrinking welfare state, the notion of optimal care well served. Therefore, a new home care model is needed has been replaced by discussions around whether services that not only includes persons living with dementia and are available/unavailable, accessible/inaccessible, and ade- their family caregivers as genuine partners in care, but also quate/inadequate; however, all three are interwoven such that embraces diversity, flexibility, real choice, and supportive without available and accessible services, services cannot be services, within the context of a national home care program considered adequate. Home-based dementia services must, [50, 54]. at the very least, provide care resources that are accessible and available in order to be considered adequate. As our findings 5.3. Organization and Delivery of Dementia Home Care illustrate, people who have the least amount of resources and Resources. Clearly, we need new ways to think about and the least amount of accessibility are the ones most struggling manage dementia home care resources. At the very least, with inadequate care resources. Consistent with Jenga, a families must receive the support services they require board game of balance, these networks are often teetering on 10 Journal of Aging Research the brink of collapse, and as long as they do not fall apart [12] L. S. Nugent, “Can’t they get anything better? Home support workers call for change,” Home Health Care Services Quarterly, then the resources are perceived to be adequate. This current vol. 26, no. 2, pp. 21–39, 2007. supplementary model of dementia home care is not only [13] J. Sims-Gould, K. Byrne, C. Craven, A. Martin-Matthews, unjust, but it is also not sustainable in the future. and J. 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