Introduction

Accelerating rates of dementia worldwide is a significant challenge to health systems [1]. In Canada, 500,000 people are living with dementia [2]. By 2031, this figure is projected to almost double to 937,000 [2]. As the majority of older adults have a desire to age at home, including those living with dementia, higher reliance on home and community care support services is expected to increase [3]. Home care supports and services are designed to enable older adults to safely remain in their own homes by providing a suite of support services, like nursing, personal support, and rehabilitation [4] Compared to community dwellers without dementia, those with dementia are more likely to use home care support services over time [5,6]. Further, individuals affected by dementia and their caregivers were particularly vulnerable to restricted or suspended access to services including home care amid the COVID-19 pandemic [7,8]. Notably, though home care service utilization declined dramatically during the first COVID-19 wave (March and April 2020), home care service utilization surpassed historical levels by end of September 2020 [8], signalling an even greater demand in the home care sector.

Due to the progressively debilitating and dependency provoking nature of dementia, family caregivers provide the bulk of support. Canadian family caregivers give 26 hours of support on average per week compared with 17 hours to older adults who do not have dementia [9]. Access to formal home care can support caregivers in their role in helping to manage the daily challenges of providing care for persons living with dementia, care, can even delay entry into long-term care (LTC) [10,11]. Home care is designed to help support people in their own homes, rather than in hospitals or LTC, and for them to live as independently as possible [4]. For people with ongoing care needs, home care may be required following a transition from the hospital. A recent study centered on care transitions identified the quality of home care as central for patients and family caregivers [12]. Challenges included accessing a range of needed community services and dealing with untimely, insufficient, and unreliable home care services [12]. Dissatisfaction with service quality, notably the lack of responsiveness and flexibility to the holistic needs of patient-caregiver dyads, was found in the international caregiver literature [13]. Poor quality of in-home care is also a risk factor for LTC placement [14].

In contrast, studies have identified elements considered to be important for “good” home care for people living with dementia [11,15–17]. These elements include the availability of formal home care services and support, in addition to the perceived knowledge, security and dignity needed to care for a person with dementia [11,15]. While few frameworks for quality dementia home care exist for use in general health settings [18], Forbes and colleagues (2008) previously identified the availability and acceptability of formal services as central to positive home and community care experiences. However, absent from the literature is a recent overarching understanding of what defines quality home care and associated best practices for those living with dementia in the community. A better understanding could help to improve models of care, workforce training and quality standard development of home-based care to support people with dementia and their caregivers. Therefore, the objective of this study was to identify core components of a quality home care experience as perceived by persons living with dementia and their family caregivers.

Design and methods

Analysis

The analysis closely followed Braun and Clarke’s thematic process [20], and it incorporated an inductive-deductive approach. Once the transcribed data was read and re-read (Phase 1), for Phase 2, initial codes were generated inductively by the first author (MS) across the entire data set. Phase 3 involved re-focusing the initial codes by mapping relevant codes to themes derived from Forbes et al.’s definitions of ‘Availability’ and ‘Acceptability’ of formal care services for persons with dementia and their family caregivers (see Table 1 for Forbes et al.’s themes/sub-themes and definitions). Following the collating of inductive codes to the deductively identified themes, themes were further refined (Phase 4). For example, reviewing and reworking the themes created several new themes [20]. While the analysis utilized a priori concepts and their definitions, new themes were also created inductively where data were not accommodated by the framework to avoid forcing data into prescribed categories [21]. Rigor was determined using a set of strategies including a coding system, and peer debriefing with other researchers and clinicians [22,23]. Engaging in memo writing and reflexive practice also served as a way of establishing rigor [24].

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Table 1. Forbes et al, themes, sub-themes and definitions.

https://doi.org/10.1371/journal.pone.0274269.t001

Findings

Twenty-one interviews happened with twenty-five participants: 4 persons with dementia with their caregiver (spousal = 3, daughter = 1), and 17 caregivers individually. Most participants were female (n = 17, 68%), were spouses of the people they were caring for (n = 10, 47%) or children (n = 9, 43%). The most common employment status of the caregivers was “retired” (n = 12, 57%), followed by “employed for wages,” (n = 5, 24%). Most caregivers relied on a mix of public (n = 20, 95%) and family assistance (n = 14, 66%), and a lesser amount had private help (n = 6, 28%) (see Table 2).

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Table 2. Participant demographics.

https://doi.org/10.1371/journal.pone.0274269.t002

Our analysis resulted in two themes framed by Forbes, Markle-Reid (26) findings that speak to components of a quality home care experience for people with dementia and their caregivers. We also present two additional themes.

Discussion

Our study findings make several important empirical contributions. From an academic perspective, we confirm previous evidence that supporting people with dementia in the community requires available and acceptable home care services [16,26]. Findings also build on extant literature using recent accounts overlayed by the global pandemic to reveal significant gaps in the adaptability and affordability of home care services for our study population. Taken together, the study depicts an overarching understanding of what defines quality home care services categorized according to these four themes. Several key theoretical contributions are made that further highlight differences from Forbes et al.’s (2008) [22] earlier work and that is the role of family—care provider partnerships in receiving quality home care, an increased focus on adaptable systems, and the cost associated with unmet need. Taken together, the results suggest that a consistent and responsive home care system that does not contribute to the economic burden of unpaid caregiving is paramount to quality community-based care for people living with dementia. All four themes are discussed below in more depth.

The types and availability of home care services centred on personal support with daily living activities (bathing, medication administration, eating), respite care and to a lesser degree, OT, and PT involvement. Reliance on these support services was high in this sample, which is representative of the population living with dementia [27]. Other studies have shown extensive home care use among those living with dementia at a rate between 22% and 27.5% of all home care clients in Ontario [28,29]. The demand for home care is suggestive of both the affected individual and their families desire to stay in their own homes and the care needs of these individuals as being chronic and complex. For example, one study showed that 50.6% of people diagnosed with moderate to severe dementia living in the community were identified as “fully dependent” with moderate to severe “frailty” and support needs in many areas; food preparation, medication administration, falls prevention and looking after the home [30]. However, our findings with regards to gaps in home care availability are in line with not only the prior work of Forbes et al. (2008) but more recent evidence of unmet home care needs of this population [31–33]. Unmet home care needs were exacerbated by the response to COVID-19 when home care services were restricted or reduced, particularly during the early phase of the pandemic. Personal care and therapies for persons with dementia were significantly interrupted, although, home care services rebounded to historical highs [8,34]. Consistent with the literature [35–37], limits on home care service and family availability were associated with LTC placement. In our findings, regular use of respite was vital to caregivers’ capacity to care for and support their family members at home. Receiving regular breaks through respite care and community day programs have been identified as practices that help keep a person living with dementia in the community longer [3]. Although barriers to the use of respite services exist, which was seen in some caregivers not being able to access these services. Barriers to the use of respite by caregivers of people with dementia include not knowing where to find information, poor quality dementia care, and caregivers’ feelings of guilt, which lead to underutilization of in-home and adult day program respite services [38,39].

When people with dementia and their caregivers have access to home care services, their acceptability is often dependent upon the perceived quality of the care, provider and scheduling consistency and collaborative partnerships. Caregivers expressed the poor quality of care with formal care providers due to their perceived inability in managing dementia-related problems. Informal caregiver burden is well documented in the dementia literature [40], as is the increase of burden with poor quality and lack of continuity of care [41]. Conversely, knowing and relating well to persons with dementia were indicators of quality care. Recent study findings found that PSWs can identify person-centred approaches to care as essential to quality dementia home care; however, time constraints, task-oriented models of care, and limited training make it challenging to deliver a high standard of care [16,42]. Simply increasing home care hours without investing in a system and cultural change—embracing tenets of personhood, increasing PWS wages, and providing dementia-specific education and quality standards—will not result in better outcomes [16,43,44]. Similarly, previous findings echo frustration over inconsistent scheduling and staffing [17]. Furthermore, delivering person-centred care becomes even more challenging since relational discontinuity prevents meaningful personalization of care [41]. Unlike other studies that saw few case managers take on an active advocacy role [32], our study findings revealed novel insights around strong family—care coordinator collaborative partnerships that fostered trust, and when not present, caregivers were left with a sense of disempowerment. The present study illuminated that the lack of quality home and care services could be mitigated by relational continuity from their care coordinator, or another trusted health care provider. Relational continuity is defined as having at least one, most trusted provider among many who has a comprehensive knowledge base of the patient and uses that to inform the management plan [45]. Some attention has been paid to relational continuity in dementia and home care literature. Relational continuity contributes to a lower risk of Emergency Department presentation and hospital admission [46], improvement in the quality of home health care [47], and it is essential to collaboration between formal and informal care providers [48].

The following theme of adaptability builds on Forbes’ sub-category of “inflexible care” (p. 90).

Acute changes in the person’s condition, like rapid functional decline or events like COVID-19, warranted adaptable and flexible home care service delivery. Yet, the extent to which services were flexible varied and was determined more by the care coordinator than the family caregiver. Study findings align with what was found in Forbes et al.’s earlier work on inflexible care as contributing to dissatisfaction with care and perceived burden among family caregivers [26]. PSWs have also identified adaptability and flexibility as core components of high-quality home care for persons with dementia [16]. The tension between what is considered essential and valued in quality home care, like personalized and flexible care, is at odds with constraints imposed by the existing home care system [49,50]. For example, home care case managers tend to pay more attention to the lack of available resources or system pressures when making care decisions while family caregivers consider the relational effects that decisions would have on the family unit [50]. Canadian literature has identified variable resource allocation in home care and the factors at play, including differences in the older client and caregivers themselves, as well as the discretion and flexibility based on professional training and insight [51]. This is consistent with “street level bureaucracy” theory that says extreme discretion by frontline professionals is used to make or adapt the policy to client needs and circumstances [52]. Such discretion can be thought of as inequitable, inadequate, or inconsistent, which may lead to sub-optimal or discrepant decisions across cases [51].

Study findings revealed the direct cost associated with inadequate levels of home care support services for people with dementia and their families. Early retirement, loss of wages and lost productivity due to the burden of care were also seen as the indirect costs of caring. In the previous availability and acceptability of home care paper, Forbes et al. (2008) briefly reported on the “cost of services.” Our results draw insight from this sub-theme to identify affordability as the final theme. Since the majority of those living with dementia are cared for in their own home by family, the economic burden falls on families rather than the health system. Data suggests informal costs (amount of informal caregiver’s time provided for care) are the main cost drivers at 60 to 84%, followed by medication costs and direct non-medical costs (paid help or transport) [53]. Family caregivers take on many unpaid tasks with little preparation, like supervision and training, care coordination, and building relationships [54], which effectively removes family caregivers from the workforce.

Implications

Our study highlights the need for improved quality in the delivery of home care support services for persons with dementia and their caregivers. Such services would be expected to not only be available to those with dementia and those caring for them, but also acceptable, adaptable, and affordable. The findings indicate the following as central to quality care: that the care relationship is collaborative and adaptable to the changing needs of both the individual and their caregiver. Although, in contrast to other chronic conditions, dementia is perceived as a more challenging condition to manage [55]. People with dementia and their families also rely heavily on a support network of social and health service resources. Negative attitudes about dementia and inadequate support could make those with dementia more vulnerable to excessive disability and premature LTC placement. We argue that strengthening home care means adopting a radical shift in how persons with dementia are regarded. Sutherland and Wiersma (56) outline three values as key to any discussion that involves dementia policy, strategy, or change: the rights of people with dementia, diversity and equity, and inclusion, all framed by a citizenship lens. Therefore, to implement these components to quality home care, including person-centred care approaches, we need to first recognize people living with dementia and their families as citizens with rights [56].

Limitations and strengths

The use of preconceived definitions of quality home care services by Forbes et al. (2008) enabled clear delineation between themes. Drawbacks to the analysis include a deductive analytical approach that might potentially force data into the a priori codes and having only one coder code the data. Although, input from different researchers provided greater rigour to the interpretation process. Since the data set coded was part of a broader qualitative study, the current study was not designed to be representative of a wider home care population. Considering this limitation, it may be relevant for future research in this area to focus on comparative analyses of ethnic monitories and non-dementia community-based care recipients and caregivers to assess the applicability of these themes. Importantly, the absence of firsthand accounts from persons living with dementia calls for future work that seeks knowledge of how people with dementia experience home care services in the Canadian context. This would assist in designing services that consider preferences, needs, and the tailoring of service to the individual with dementia. From an applied health research perspective, our study design had the flexibility to develop a deeper understanding of quality dementia home care, and even the potential to advance the dementia home care quality agenda.

Conclusion

With an aging population, increase in home care client acuity, and post-COVID-19 concerns over LTC, more attention is needed to improve the quality of home care. The demand for these services will continue to increase particularly for those living with dementia and their families. The findings of this study can help to lay the groundwork for core components of quality home-based dementia care—availability, acceptability, adaptability, and affordability. The interplay between these four components is foundational to informing quality standards and related strategies to enhance care delivery with attention paid to the needs of people living with dementia and those who care for them.

Supporting information

Acknowledgments

Thank you to all participants that shared their stories with grace and honesty.