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)
The number of people living with Alzheimer’s disease or related dementia (ADRD) is expected to more than double within the next 25 years, affecting over 1.1 million Canadians and their families [
The challenges of providing home care have been well documented. Lack of support for family caregivers [
In Ontario, 67% of formal home care has been provided by personal support workers and 27% by nurses, many of whom assume the role of case manager [
With the impending increase in the population of older persons in Canada, the availability of these human health resources to meet the growing demand for home care services is of rising concern to health care planners, policymakers, and other stakeholders [
This article focuses on home-based dementia care from the perspective of persons with dementia, their family members, and home care providers, situating these experiences within a sociocultural context. In particular, we examined the relational experiences of clients, family caregivers, and providers involved in dementia home care, and the contextual factors that influence the formation and negotiation of those relationships, with the ultimate aim of identifying the necessary policy and practice changes to improve dementia home care. Four integral relational care processes emerged from our findings:
Previous research on home support has identified that one of the challenges for home care workers is forming and maintaining relationships with clients and their family caregivers [
Those studies that have explored home-based dementia care services have focused on the relationships between family caregivers and home care providers [
Although the relationship between the informal and formal care systems has been studied in a variety of settings, including home care [
There is also a need to examine the sociopolitical context of dementia home care because it permeates care systems at all levels [
In summary, there is limited research that examines the sociopolitical context of dementia home care. Given the increasing use of home care services, the projected decreasing availability of family caregivers and the increasing number of persons with dementia health care practitioners and policy makers would benefit from an increased understanding of the perceptions and experiences of persons with dementia, and their familial and formal care providers with regards to the management of home care resources.
The purpose of this critical ethnography was to develop a better understanding of home-based dementia care within a sociocultural context, shedding light in particular on those sociocultural, taken-for-granted values, beliefs, and practices embedded in the dementia home care culture.
As in other Canadian provinces, home care in Ontario entails the delivery of a wide range of health services to people of all ages who may be recovering from an illness, disabled or terminally ill. The central agency through which families access community care begins to manage a “case” by triaging it into one of five care domains: acute care, rehabilitation, maintenance, long stay supportive, and end-of-life care; seniors with dementia are usually classified into maintenance or long-stay supportive categories. Thereafter, care planning begins with a standardized assessment of the 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 preferences and strengths. As such, individuals receiving home care may be provided with medical, nursing, social, or therapeutic treatment or with assistance with essential activities of daily living. The fiscal constraints that characterize the province of Ontario's health care, however, preclude the provision of assistance with instrumental activities, such as housework, shopping, or meal preparation.
Case managers of the local Community Care Access Centre (CCAC) and other community collaborators served as key informants assisting with the identification and recruitment of potential procedures. All persons involved in the “caregiving network” of nine persons with dementia were requited for this study. To be included in the study, clients with Alzheimer’s disease or related dementia had to speak and understand English, be at least 60 years of age or older, and have at least one family member or close friend providing regular care (minimum of 4 hours of direct or indirect care per week). Once the client and family caregiver(s) agreed to participate in the study, the home care worker(s) assigned to their care, for a minimum of three home visits, was invited to participate in the study by a member of the research team.
The total sample was comprised of nine networks, which included nine older adults with dementia, 25 family caregivers, 10 formal healthcare providers, and 7 CCAC case managers. The nine persons with dementia (PWD), four of whom were male, ranged in age from 75 to 91 (average 83.7 years). All but one were married, one was a widow, three had postsecondary education, one had only primary education, and the remaining PWD had secondary education. Standardized Mini Mental State Exam (SMMSE) scores ranged from 10/30 to 26/30, averaging 15.8 (
All nine networks were receiving formal home care support from personal support workers (PSWs). At least one 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 age of the PSWs was 52.8 years. Four worked full time, the others worked part time or on a casual basis. All seven home care case managers were female and of Anglo-Saxon decent. Their ages ranged from 45 to 57 (average: 50.9) years, and they had worked between 4 and 20 (average: 9.4) years as a case manager. Four of the managers coordinated caseloads that were primarily urban (i.e., within a large city in southern Ontario); the other three case managers provided services for those living in the surrounding counties (i.e., small towns and rural settings).
A total of 52 in-depth, semistructured interviews were conducted with clients, family caregivers, and PSWs. Each participant was interviewed two to threetimes over a period of 19 months (January 2007–July 2008). At the beginning of the initial interview, participants were asked to complete a brief demographic questionnaire, and for each person with dementia, an SMMSE score was obtained to describe the level of cognitive impairment. With the exception of the focus group interview with the case managers (which was conducted at the local CCAC office) and two interviews conducted by phone, all the interviews were conducted in the home of the client and/or family caregiver. After each interview, researchers dictated full field notes about their observations, perceptions, insights, nuances of communication, nonverbal expressions, caregiving behaviors, and interactions between and among all participants [
Following the guidelines for data analysis of Lofland et al. [
Based on our analysis, three interrelated, dialectical themes were identified: (1)
Study findings revealed that the resource allocation by the formal sector depended heavily on families and friends to provide the bulk of care and assistance to persons with dementia, and only as a last resort, were formal care resources utilized to supplement this care. The notion of formal care resources as scarce commodities produced, by default, a view that familial care resources were abundant. Furthermore, the need for formal care assistance tended to be based on the assumption that family members were not only capable, but (ought to be) willing to provide care to members with dementia. Although all study participants addressed this “unspoken” reality that families provided the necessary care first and foremost, case managers were positioned to actively cultivate the availability of familial care resources. As one case manager explained:
I have a new demented person and the first thing that I did is to try to rally every family member… and gather as much family or friends that you can to start off with and focus on and get as much care in there as needed.
Care resources provided by the formal sector were viewed as supplementary “help” to the family, being made most readily available when the family member was viewed as “desperate” or in response to a crisis. In an extreme situation, one spousal caregiver explained how formal care resources were withheld until she secured the assistance of a physician:
And she [nurse] said, “Is he [person with dementia] in agony?” And I said, “Well, I don’t know.” “Well when he gets in agony, call me 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, and he said, “What’s going on?” and I said, “Thomas’s catheter is plugged… and the [nurse] told me that I was to wait until he was in pure agony, and then call her back.” And he said, “I beg your pardon? Do you have her phone number?” And I said, “Yes I have.” “Well you give it to me. I’ll get back to you.” Within 10 minutes he called back… and he said, “Sit back and relax…she’s coming in.” But that kinda thing, you know? Who needs it? Nobody!
Furthermore, many family members reported feeling unheard when they expressed concerns or an inability to continue providing care. Another spousal caregiver stated that she only received “help” from the formal care system when she threatened to stop providing unpaid care:
My breathing has been terrible since I had my heart attack … and I’ve been begging for help … Nobody listened until now. And Jill [case manager] called me when I was trying to fix supper and I couldn’t breathe. And she said, “Joan, you don’t sound very good!” I said, “No …Sorry Jill. I’m ready to give it up…I can’t do this anymore. This is just too hard to do.” [She responded] “Oh no! Don’t do that. No, no don’t do that!” So I received extra help… But it makes you feel you are on your knees, all the time begging for some help.
Despite the potential for “caregiver burnout”, case managers were required to distribute formal care resources within the current fiscal constraints of home care. This approach to dementia home care limited them in providing adequate support, even when familial care is exhausted. As one case manager reported:
Like that caregiver burnout, drop dead thing, the back-up plan for [the care of] these memory clients, there isn’t one. So I mean I think that’s how we can do it [alleviate caregiver burden]…four hours a week is what we’re going to provide and we do whatever we can to make it work.
Using a supplementary approach to managing dementia care resources, however, did not alleviate caregiver burden in this study. Instead, the provision of care to persons with dementia over long periods of time exhausted the capacity of most families. Expectations of families to provide complex, continuous care without adequate formal care resources disproportionately burdens families exacting financial and emotional consequences. One spousal caregiver described the devastating and costly toll on family capacity and stability.
I’ve got a husband at home with dementia… I cannot leave him. [My doctor asked me] “Well don’t you have any family?” [and] I said, “Well, my family disowned me because I used them too much.” And, it’s true.
To complicate matters, the amount of formal home care available to persons with dementia and their families was often based on different interpretations of “hours available” and “need”, with opinions varying amongst family caregivers, in-home care providers, and case managers. A personal support worker responded to the question of increasing the hours of home support workers as a means to provide respite for a spousal caregiver,
That [maximum amount of hours] would be 15 hours in a week. And I don’t know if … CCAC would allow it … It is hard to tell. It’s because that would be the maximum hours … as far as I know, it’s 60 hours in a month.
Ultimately, case managers were positioned to recommend the ‘appropriate’ amount and frequency of formal home care support, depending on their assessment of the situation and the degree of latitude granted by their employer. Although most case managers conveyed that they followed a ‘standardized approach’ in the allocation of available formal home care resources, others reported that this was sometimes negotiable, depending on the needs of the family. As one case manager explained:
I’ll go out to a home and they’ll say “Oh, I know she [another family caregiver] gets three afternoons a week to go out and play bingo.” …then I kind of have to say, “Tell me what you feel you need.” Like…I’m not going to walk in and tell you that you’re going to get twelve hours, it’s what you need to continue doing this. So again, there’s no hard fast rule.
The provision of formal home care resources for persons with dementia and their family caregivers in a timely way was also another challenge identified. There were health and safety consequences to families when formal care resources were unavailable, especially during the evenings and/or weekends. A spousal caregiver recalled a situation in which she required the assistance of her landlord during the evening to clean up after a toileting accident:
I don’t know how it happened, but the walls, the toilet, everything was covered [in feces]. And he [person with dementia] is trying to get down there, not telling me, trying to clean it up. And of course he ends up with it all over him, his hands. So then he’s getting the taps. So disgusting (whispers)… It took [the land lord] an hour and a half to clean that bathroom, put my laundry in for me, and I said to him, “Boy this is beyond the call of duty…And I really appreciate it.” He said, “Don’t worry about it” … But it’s embarrassing, not for me so much, as it is for him… but I had no one else to call!
A daughter caregiver further explicated the context of home dementia care delivery, reflecting the belief that there was only a certain amount of care available:
I mean I know everybody is stretched to the limit…Even when you do request more care you are very fortunate if you get it, because there aren’t as many PSWs and nurses out there, they can make a whole lot more money in the hospitals, so trying to get a lot more care [is not realistic]…we were very fortunate that we got what we did as far as I can tell.
Furthermore, when familial care resources were limited or became exhausted, the consequences to the person with dementia were potentially life threatening, as the following quote from a spousal caregiver depicted:
… She was in the hospital twice in two months …just because I couldn’t take care of her. The first time she was severely constipated, I don’t know!? She was only there for a day. And then the second time, she hadn’t eaten … and [was] not drinking and she got dehydrated.
In addition to providing the vast majority of day-to-day care to the person with dementia, our findings indicated that family caregivers also assumed a great deal of responsibility for managing the care of people with dementia. One PSW spoke of the coordination role a daughter played in caring for her mother, noting how this was the exception, as there were many others who were not resourced as well:
But you know, even though her mom is living independently…I think Jane [daughter] does spend a lot of time monitoring, controlling, planning, setting up her mom’s appointments, you probably heard about the appointments. She regularly goes to her dentist and her optometrist and the hearing specialist and now the dermatologist … Jane is very particular about her mom’s health and taking her to appointments. (Pause). You see so many other cases where that just doesn’t happen or where people have been parked in an apartment by themselves and say “Well mom manages best as she can” and they just don’t manage.
Some people with dementia were also aware of how their families provided and managed their care. One woman remarked that her daughter coordinates her care which she finds helpful:
She gives a lot … just in her own way…I don’t know how she remembers all those things said in that book... Well it’s quite a bit to remember. She’s gotta have everything just so!
In summary, the approach to care resource management was a supplemental model of care wherein formal home care resources were positioned as finite and precious commodities while family resources were viewed as “cost-effective” and inexhaustible. Many families, however, did not have the available resources, time or skills to assume the care management of people with dementia living at home, and yet, that was what was expected of them in view of the limited formal care resources. Moreover the management of care resources, formal or familial, was particularly challenging if the resources were inaccessible.
Although caregivers, providers, and case managers spoke about the importance of accessing a variety of community dementia care resources, many family members did not know which services existed or how to access them. Our findings also identified many barriers that prevented existing services from being accessible, such as long waiting lists (e.g., respite), rigid eligibility criteria (e.g., home care support), or cost of services (e.g., transportation, adult day care programs).
Services were not only difficult to access in a timely manner, but were often transient or nonexistent. For instance, many participants spoke about the need for accessing appropriate respite services, both in-home and within day programs. The case managers, however, claimed that the actual provision of respite was challenging because there was never enough respite to meet the needs of families when they actually need it. Therefore, it was not uncommon for families to have to book six months or more ahead of the time the service was required. One son spoke about the lack of access to appropriate, timely resources for this father (person with dementia) at a time when his family needs were the greatest.
…I was there that summer and I do recall a lot of our hard times trying to get that extra help. Trying to increase the time for my father …. Like it would take a burden off and then she [mother] could do some of the stuff that needed to be done around the apartment… I can tell you if, there was ever a time where you need a lot of help, that was it ….I think that was a really bad example of how the system [didn’t work]… I don’t think it worked great at all.
Accessing care resources in a timely way is also compromised by systemic barriers, such as the hierarchal structure of the home care system, busy caseloads, and infrequent contact between home care providers. For instance, if personal support workers had any concerns or questions, they are instructed to contact their managers at their specific agency, who, in turn, contacted the CCAC case managers. For example, one PSW encountered difficulties in contacting his case manager to discuss a proposed increase in his hours due to deterioration in the health of the family caregiver.
I leave her [agency manager] notes if I have a concern, and sometimes I’ve even called her with things. At least I tried to get through. She’s very hard to get through to…she never seems to answer her phone…
In another situation, the spousal caregiver felt it necessary to make the drastic decision to move to another apartment building, so her husband could continue to receive care from the same home support worker when their “catchment area” had been rezoned. As her daughter explained:
Bobby [PSW] seemed to be a real big help in our family and when his territory was, changed, my mother and father moved so that they could maintain support and not have to go to a new person. Because she just did not want to lose that support, and my dad seemed to respond to him.
There was also a discrepancy between what case managers
As a case manager it’s my job to help with system navigation, to help them access [resources/services], tell them what’s available, but to let the caregiver make decisions as to what they feel they need as they progress, and to support them through this journey.
And yet, as a daughter caregiver elucidated, bringing support into the home was neither a transparent process, nor, at times, a user-friendly activity:
…If the support can be easily brought into… the home then I think that is preferable than taking a person out of the home…I don’t think there is any comparison … and when I say easy [to navigate the system], I also mean like just the process itself who—who to call, how to do it and not make it a challenge or a huge difficulty for the family or the caregiver.
When formal care services were provided in a standardized and regimented way, they were often described as inadequate and substandard. Older adults and their families struggled to acquire additional, essential resources to fill in the substantial gaps left by the formal system. Families who were without access to appropriate, timely home and community services were particularly vulnerable. As one daughter caregiver described:
You know that was an additional expense [house cleaning] and I couldn’t pay for it …[So] now they come every 2nd week, so things like that, house cleaning which seems to be really basic care, are huge … help because it’s just that much time and energy that she [spousal caregiver] doesn’t have to spend on something you know, where she’s probably already exhausted.
Those who could not afford to buy additional supports were also less likely to complain about substandard or inept in-home care for fear of not receiving any assistance. As one spousal caregiver explained:
You just aren’t comfortable saying it’s poor care because I didn’t think I’d get anyone else…And I couldn’t go with nothing…So it was, “hang in there”.
Thus, although the rhetoric of the system of home health care suggests that resources essential to quality home based dementia care are universally accessible to persons with dementia and their families, unfortunately, our findings illuminate that this assumption is more rhetoric than reality.
The final theme reflects the temporal nature of care resources, whereby diminishing care resources occurred, while care needs are simultaneously increasing. The adequacy of resources was often assessed on what types of formal and familial care resources were available in the past, and if they met the current needs of the person with dementia, without adequate provision for future care. As a son caregiver clarified:
She [mother, caregiver of father] has Mark [PSW] here, and she’s paying [a housekeeper] to come in and take care of the basic stuff. So, as long as those things remain and everything stays the same, then those would be the key components to make it work. If those disappeared, then I think it would…throw her out of whack, actually. I mean, I know that I can’t keep coming in here every day.
The preceding quotation illustrates how formal care resources needed to be monitored on an ongoing basis because the demands of care as well as the familial resources often change over time with the progression of the disease. 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 giving, the same level of resources and services may be no longer adequate or readily available. A daughter caregiver described this shift:
We, we’ve come to realize in the last year, that my dad’s health has changed more significantly than it had previous to this last year and my mom’s physical capability and mine…you know, we’re not big strong people who can make sure he gets bathed properly and that kind of thing. We don’t have all the appropriate facilities. It would be great if we had all the money in the world and we could build a big huge house to keep everybody with all of the sort of facilities and handicap services and everything. That would be great, but that’s just not a reality.
Challenges in providing care are therefore exacerbated when there is a constant risk that the resources presently available will cease to be available or will become
I find they [family caregivers of persons with dementia] need more help than they’re getting now whether it’s PSW hours or hours with the nurse or some type of a counselor going in there assessing situations more often… More people could be kept out of institutions if they had a little bit more home help… more resources, more people watching, more people, some sort of a method where people are on top of the situation more.
There was also a sense of collective resignation amongst families, providers, and case managers that the current dementia home care system was the “best it can be.” One case manager described her sense of powerless:
I think when I first started out as a case manager, especially with dementia care patients, I really had to learn that you should let go and sometimes things will just be the way they are…you can only do so much. I call it “crash and burn”. If somebody is going to crash and burn, it’s going to happen and
These words reflected an implicit assumption that the formal care system is there to “help” families who do not or cannot provide the bulk of care for persons with dementia. This reinforces the notion that the care of older adults in the community is a family issue, instead of being viewed, at least in part, as a system failure that requires a different approach to dementia home care.
Dementia home care was portrayed by persons with dementia, caregivers, providers and case managers in nine dementia care networks as three interrelated, dialectical themes:
A home care system that depends so heavily on familial care should recognize families as indispensable partners in dementia home care, not resources to be exploited [
Study findings also revealed that the taken-for-granted assumption of finite formal care and inexhaustible family care is particularly difficult for families with limited financial and familial care resources. Their energy and capacity to provide care became depleted at the time when family caregivers needed them the most—as their relative’s cognitive ability progressively declined. While there are several clinical assessment tools to measure caregiver burden [
Although the inequitable distribution between formal and familial care results in substantial costs to caregiving families [
This expectation for family caregivers to deliver the bulk of dementia home care is not only shortsighted, but unaffordable. As dementia rates continue to rise, the costs of providing care to persons with dementia living in the community warrant increased attention [
To ensure adequate provision of formal care resources, however, equal attention must be paid to the recruitment and retention of a strong home care workforce. The current shortage of home care workers is troubling [
Similar to other studies [
Similar to Pratt et al. [
Clearly, we need new ways to think about and manage dementia home care resources. At the very least, families must receive the support services they require to prevent their need for costly specialized services and premature institutionalization of the person with dementia or their caregivers [
As in other neoliberal states where austerity measures reduce the resources available for social and health care, Canadians have witnessed in the last fifteen years the offloading of once public social programs to mixed economies of public, private, and for-profit welfare [
With the shrinking welfare state, the notion of optimal care has been replaced by discussions around whether services are available/unavailable, accessible/inaccessible, and adequate/inadequate; however, all three are interwoven such that without available and accessible services, services cannot be considered adequate. Home-based dementia services must, at the very least, provide care resources that are accessible
Study findings suggest that we need to engage in critical dialogue and working toward policies and practices that will result in available and accessible resources to ensure optimal “aging in place” home-based dementia care. To meet this goal, we must first challenge the current assumption that formal care is finite and family care is inexhaustible. Home care practices and policies need to take into account the family’s capacity to provide complex care over time. Second, the provision of available and accessible resources, including respite, programs, and home support workers, is essential to support families who provide this care [