Formal Care Providers' Perceptions of Home- and Community-Based Services: Informing Dementia Care Quality

Abstract

Little attention has been given to the perceptions of formal care providers on the nature and quality of home- and community-based dementia care. The purpose of this descriptive interpretive research was to explore formal care providers' perceptions of their experiences with Canadian home- and community-based dementia care. Participants within three personal interviews and six focus groups (n = 41) included nurses, social workers, therapists, home care aides, and Alzheimer Society personnel (front line/management) in rural and urban areas of Saskatchewan (n = 16), Manitoba (n = 20), and Ontario (n = 8). Two overarching thematic categories, Service Availability and Service Acceptability, emerged from the data analysis. Subthemes of availability were identified as: (a) challenges of service availability, including service wait lists, lack of home care provider training, lack of community-based dementia care infrastructure, and sociocultural and geographic barriers to accessing dementia services; and (b) essential facilitators of availability, including service infrastructure, service bridging, and agency partnerships to form coordinated care systems. Subthemes of acceptability were revealed as: (a) essential components of dementia care, including provision of comprehensive personal care and the use of dementia care professional practice knowledge within a home care setting; and (b) service challenges, including inadequate service time for the physical care and socioemotional support of the client and family caregiver, caregiver and formal provider difficulty with navigation of a fragmented care system, lack of system coordination, and financial costs of services. Essential, integrated dementia care could be established by listening to the “voices of formal care providers,” thereby decreasing dementia care costs and increasing the quality of life for those with dementia, and their family caregivers.

KEYWORDS:

• formal care providers
• perceptions
• dementia care

INTRODUCTION

Little attention has been given to the perceptions of formal health care providers, that is, paid professional and nonprofessionals, on the nature and quality of home- and community-based dementia care (Guberman, Lavoie, Pepin, Lauzon, & Motejo, 2006). The challenges of providing quality care have been underpinned by aging demographics (Forbes & Neufeld, 2008; Forbes, Neufeld, & Reutter, 2003; Gaugler & Kane, 2007), lack of financial resources to implement and sustain a health and socially based home care infrastructure to provide support to the informal caregiver and formal care provider (Health Council of Canada, 2008; McAdam, 2000), movement of acute and chronic facility-based care to community settings without the corresponding transfer of funds (Rajnovich, Keefe, & Fast, 2005; Romanow, 2002), early hospital-to-home discharge policy (Armstrong, 2002), and a focus of home care services on acute problems and physical needs versus a more holistic approach that focuses on maintenance, prevention, and promotion of health (Kushner, Baranek, & Dewar, 2008).

Traditional facility-based care has been transferred to unpaid caregivers who provide 80% of community-based health, and social and personal eldercare (Manning, 2004; Schwab, Leung, Gelb, Meng, & Cohn, 2003). In this article, unpaid caregivers are referred to as informal or family caregivers. The Canadian Study of Health and Aging Working Group (CSHA, 1994) revealed that one out of every three Canadians over the age of 85 will develop Alzheimer's disease or a related dementia, and 97% of those with a diagnosis of dementia will have an informal caregiver. Moreover, CSHA (2000) has estimated that 60,150 new cases of dementia will occur each year. The estimated annual cost for an individual with mild dementia is $9,451 and for an individual with severe dementia, $36,794 (Hux et al., 1998).

Health system planning for enhanced publicly funded home care (Soroka, 2007) could benefit from an increased understanding of professional and nonprofessional home- and community-based care providers' experiences in the provision of dementia care. In-home support of family caregivers could decrease health care system costs, enhance quality of life for caregivers and the people they care for, and contribute to the development of health and social home care policy. The purpose of this article is to explore the perceptions of professional and nonprofessional care providers in providing home- and community-based dementia care. This knowledge may be used to inform practice and policy regarding the essential components and processes of in-home and community-based dementia services to enhance the quality of care.

DEFINITIONS OF COMMUNITY-BASED SERVICES AND SUPPORTIVE HOME CARE

The Canadian Home Care Association (2007) defines home care as “an array of services, provided in the home and community setting, that encompass health promotion and teaching, curative intervention, end-of-life care, rehabilitation, support and maintenance, social adaptation and integration, and support for the informal (family) caregiver.” Supportive home care includes professional health care (i.e., nurses, therapists, social workers) and support services such as homemaking, personal care, in-home meals, and respite services (Canadian Institute for Health Information, 2007). Other community-based care services include day programs, transportation, and geriatric assessment services. Home care constitutes the largest segment of Canadian community-based services and is one of the most rapidly expanding components of the health care system. However, due to the lack of a national home care framework and standards, home care has resulted in a mix of public and private service coverage and inconsistent home care services across Canadian Health Regions and provinces (Hollander, 2004; Manning, 2004).

LITERATURE REVIEW

The provision of interventions by paid providers to assist clients and their caregivers with in-home dementia care has resulted in significant improvements in health outcomes. Home care nurse interventions have been linked to a significant decrease in care recipient and family caregiver depression and an increase in caregivers' social functioning at no additional cost to society as a whole (Markle-Reid et al., 2006), as well as reduced social isolation and increased caregiver autonomy, skill, and knowledge (Magnusson & Hanson, 2005). Neither of these two studies specifically targeted participants with dementia.

Pinquart and Sorenson (2006) reported on a meta-analysis of 125 studies of dementia care counseling, case management, and education interventions that provided significant reductions in family caregiver burden and depressive symptoms, and increased caregiver knowledge, abilities, and access to dementia care. Callahan et al. (2006) found that a collaborative care intervention significantly enhanced the availability and accessibility of community-based dementia care. The intervention involved an interdisciplinary team (nurse practitioner, family physician, geriatrician, and psychologist) who shared knowledge with family caregivers to address behavioral and psychological symptoms experienced by persons with dementia. Study findings revealed reduced levels of depression in caregivers, and fewer behavioral and affective symptoms of dementia in care recipients. However, findings from these studies (Callahan et al., 2006; Pinquart & Sorenson, 2006) did not illuminate formal providers' views on the potential facilitators and barriers associated with the quality, availability, and accessibility of community-based dementia care interventions.

Extensive research has been conducted on family caregivers' expectations of formal providers who provide in-home dementia care (Forbes, Morgan, & Janzen, 2006; Forbes et al., 2008b; Heinrich, Neufeld, & Harrison, 2003). Caregivers expect to receive individualized, consistent decision-making support to navigate the complex dementia care system (Neufeld, Harrison, Hughes, & Stewart, 2007; Forbes & Neufeld, 2008). In addition, they wish to be included as a partner with home care providers as family caregiver needs must be a primary consideration in the care process, and they have experiential knowledge to contribute to the assessment process and provide most of the care (Forbes et al., 2003; Forbes et al., 2008b). Factors that may influence in-home caregiver expectations include: (a) the transition of women who have been traditional family caregivers into the paid workforce; (b) the diverse nature of family structures and relationships (Fast & Keating, 2000); and (c) escalating levels of client dependency on the caregiver due to the progression of dementia, and people living longer than in the past (Rajnovich et al., 2005). However, little is known about formal providers' perspectives on the nature of family caregiver expectations and experiences.

One study (Huang, Shyu, Chen, Chen, & Len, 2003) used the theoretical premise of partnering (Harvath et al., 1994), that is, the mutual sharing of the professionals' knowledge and the caregivers' personal and experiential knowledge to affect quality care. Huang and colleagues conducted a randomized controlled trial to test a behavior assessment and environmental intervention administered to family caregivers of older adults with dementia. Study findings revealed a decrease in the incidents of agitation experienced by the care recipients with dementia and an improvement in the ability of family caregivers to manage in-home factors associated with behavioral agitation. The study did not describe formal care providers' perspectives on the barriers and facilitators to partnering to achieve quality care.

Ward-Griffin (2001) articulated that nursing practice has evolved to a teaching and “negotiating” role with family caregivers and clients in addition to the traditional role of treatment and care delivery. Limited knowledge exists about how in-home interactions between nurses and caregivers may influence the teaching and “negotiating” process of in-home care (Goodwin & Happell, 2006; Ward-Griffin & Marshall, 2003).

One descriptive qualitative study explored home care nurses' beliefs about the role of families in a home care setting (Benzein, Johansson, & Saveman, 2004). The nurses' identification of key facilitators and barriers to the provision of home care was linked to how caregivers accepted or resisted home care services. Families that were viewed by nurses as a resource for in-home care were invited to express their concerns related to planning for the care recipient. Families who were viewed by nurses as resistive to in-home care were provided with prescriptive and noninclusive forms of in-home education. The study concluded that nurses' beliefs and values about the roles of family caregivers impacted on the type of home care provided to care recipients and their families.

Another qualitative study identified home care providers' perceptions about the meaning of “dignified care” for the frail elderly (Arino-Blasco, Tadd, & BoixFerrer, 2005). Interview findings from 85 professional and nonprofessional staff revealed that respect, autonomy, and empowerment were essential components of person-centered elder care. The two previous studies (Benzein et al., 2004; ArinaBlasco et al., 2005) did not address providers' perspectives on how the challenges of service delivery may affect nurses' perceptions of family caregivers' roles and needs, and the provision of quality home- and community-based dementia care.

Research has not explored formal care providers' experiences with home care system issues. These issues include service access in rural and remote areas, transportation to community support agencies, flexibility in the provision of respite care, financial assistance to families for self-managed dementia care, and professional sensitivity to meet cultural and gender expectations of the family and client such as language and communication needs (Whittier, Scharlach, & Del Santo, 2005); workload, workplace satisfaction, and provider payment strategies (Armstrong-Stassen & Cameron, 2005); and the lack of standardized home care services across Canadian provinces that is associated with varying levels of provincial health plan support (Manning, 2004).

To date, comprehensive government policy has not been enacted to address the deficiencies of publicly funded home care (Rajnovich et al., 2005). Although family caregivers' needs have been identified (ArinaBlasco et al., 2005; Hollander, 2004; Mahoney, Trudeau, Penyack, & MacLeod, 2006; Schwab et al., 2003), scant literature exists regarding formal care providers' perceptions about meeting the needs of caregivers and how this influences the nature and quality of home- and community-based dementia care. The lack of attention to the perceptions of care providers about the quality of home care for persons with dementia and their family caregivers is surprising, given the looming dementia crisis (Forbes & Neufeld, 2008), and the need for increased understanding of paid home care providers' perceptions on how to improve the quality and accessibility of home care, which has been advocated in previous research recommendations (Health Council of Canada, 2008; May et al., 1999).

STUDY DESIGN

This qualitative research was one component of a mixed-methods approach used to describe the use of health care services by Canadians with dementia, and the role of home care and other agencies in meeting the needs of those with dementia and their unpaid caregivers (Forbes et al., 2008a; Forbes et al., 2008b). A descriptive interpretive qualitative design (Thorne, Reimer Kirkham, & MacDonald-Emes, 1997; Thorne, Reimer Kirkham, & O'Flynn-Magee, 2004) was used to collect data from home- and community-based care providers through personal interviews and focus groups. The purpose of this article is to describe the perceptions of formal care providers in providing home- and community-based dementia care. Ethics approval for the study was obtained from the Research Ethics Boards at the Universities of Saskatchewan, Manitoba, McMaster, and Western Ontario.

METHODS

Research participants completed consent and demographic information forms prior to the data collection process. All data collection occurred during the participants' scheduled hours of paid work. A semistructured interview guide focused on: (a) the experience of formal care providers in meeting the needs of caregivers and clients who receive in-home dementia care, (b) the role of home care agencies and other community-based services in meeting these needs, (c) barriers and facilitators to the provision of home- and community-based dementia care, and (d) the skills needed by providers and family caregivers.

Sample

Maximum variation sampling was employed to select a sample of English-speaking professional and nonprofessional health care personnel providing community-based services to caregivers and individuals with dementia. Six focus groups (n = 41) and three personal interviews were employed to collect data from rural and urban care providers in the Canadian provinces of Ontario (n = 8), Manitoba (n = 20), and Saskatchewan (n = 16). Of the 44 study participants, 25% worked in rural areas, 41% worked in urban areas, and 34% provided services in both rural and urban locales. Research participants were primarily female (93.2%) and within the 40 to 60 year old age group (82%). Respondents occupied the following position designations: home care nurses (29.5%), home care aides (22.7%), therapists (13.6%), administrators (18.2%), and care coordinators (15.9%).

Places of employment included home care (45.5%); the provincial Alzheimer Societies (18.2%); mental health centers (15.9%); geriatric assessment centers (11.4%); and Victorian Order of Nurses, Adult Day, and Elder Care Agencies (9%).

Most respondents reported that dementia clients constituted 10% to 19% of their caseload. Of those who responded to the question “my current level of knowledge and training has adequately prepared me to care for people with dementia,” 9% indicated that they were unsure or mildly disagreed, 56.8% indicated they mildly agreed, and 31.8% indicated they strongly agreed.

Data Analyses

The interview format was flexible and evolved to respond to the shared experience of the researcher and participants in discovering the intents of the participants' discussion. Responses were summarized and repeated to the participants by the researcher throughout the interview. The credibility and authenticity (Sandelowski, 1986) of the study findings were promoted through the verbatim transcription of audiotaped interviews and focus groups. Thematic analysis of the qualitative data illuminated an understanding of the participants' subjective knowledge and experience and implications for professional practice (Thorne et al., 1997; Thorne et al., 2004). The principal investigator, coinvestigators and several research assistants at each research site read the transcripts, reflected on meanings of the participants' experiences, met on a weekly basis to discuss their interpretation, and then applied thematic codes and subcodes to appropriate excerpts. An iterative process was used to compare and contrast the themes within and between the transcripts to ensure that the meanings were reflective of the participants' responses. Following the initial coding process, the themes were compared and contrasted across the three research sites. Data collection and analysis occurred simultaneously. Data were stored and managed using Nvivo 7 software.

FINDINGS

Key data findings are organized within the overall themes of availability of home- and community-based services and acceptability of home- and community-based services. The theme ‘availability of home and community-based services’ refers to the continuum of home- and community-based services that is able to assist formal care providers in their work (e.g., services that fully meet their clients' needs, to partially meeting their needs, to services that are unavailable). The subthemes of availability are identified as (a) Challenges of Service Availability, including service wait lists, lack of home care provider training, lack of community-based infrastructure to provide dementia care, sociocultural and geographic barriers to home- and community-based dementia services; and (b) Essential Facilitators of Available Dementia Care, including service infrastructure, service bridging, and integrated care systems.

Challenges of Service Availability

Service wait lists

Focus group dialogue highlighted the limited supply of human and fiscal resources for dementia care within a home- and community-based environment. All participants in the three research sites indicated that limited resources result in fewer services directed toward prevention and maintenance. Without these supportive services, family caregivers are unable to manage care and require more costly services such as emergency, acute, and long-term facility care (Canadian Home Care Association, 2006; McCracken et al., 2005):

There are many desperate people waiting. There's a lack of nurses, so we don't have enough staff to accommodate all the clients coming into home care, so they all have to sit in the hospital until we can find the room to get them into our schedules. Any support that we give, which is within our eligibility criteria is clearly not enough for the families.

Lack of home care provider training

The lack of training and certification requirements for some home care providers also was regarded as an impediment to home care quality and availability. As several providers indicated, “We rarely get people who understand both dementia and have personal care skills … and sometimes when people do come in they're not trained, and they don't do a good job, and they make it worse so the clients don't use home care.” Moreover, 65% of the research participants reported that they were not completely confident that their knowledge and training had adequately prepared them to care for clients with dementia. Enhanced pay and benefits, development of work schedules that pair formal providers who wish to provide dementia care with those people who have dementia, and recognition of providers' experiential skill were recommended as strategies to increase the quality of home care services and retention rates of home care personnel.

Lack of community-based dementia care infrastructure

The lack of home and community care infrastructure (i.e., day, respite, and palliative programs) also may impact on the availability, accessibility, and inappropriate use of other community-based dementia care supports. Research participants asserted that some day programs provide respite and socialization and are premised on a nonmedical model that does not necessarily have the capacity for complex care. The lack of availability of specialized community-based dementia care to meet the behavioral and physical care needs of the person with dementia may result in more expensive services such as hospitalization. For example, this participant stated,

They [day programs] are staffed by recreation assistants to keep it as a nonmedical model. Families access the day programs on multiple days because there isn't enough home care or they are not eligible for home care until the dementia illness progresses. However, people with cognitive impairment are not tolerated well in seniors' centers. Families wait for an absolute crisis to have their family member placed in a hospital.

Interview findings revealed that there is a mismatch between the criteria for palliative care and the needs of the person with dementia and their caregiver. Participants identified that palliative care criteria are designed for clients without dementia. The caregiver of a family member with dementia can lose palliative benefits because “[t]he person with dementia doesn't fit the criteria or time frame for palliative care… . They don't die within that six-month period and their services have been taken away.”

Lack of respite was identified as a major impediment to quality dementia care because of the mismatch between respite needs and respite services: “We don't have much capacity to bring respite into the home. Many family members find it disruptive to take them from home and put them in an institution for a few weeks.” One participant described a respite matrix consisting of planned, crisis, and in-and-out-of-home respite. However, the type of respite was seldom congruent with the type of respite required by the family caregiver: “I don't always think that the respite options match the respite needs.” All participants agreed that the quality of respite service could be improved if it was planned from the caregivers' perspective:

The definition of respite is now in the hands of the caregiver. Respite may be having three hours of uninterrupted sleep, to another person it may be going on a mini vacation. Respite may be offering emotional support as primary support to the caregivers.

Sociocultural and geographic barriers to home- and community-based dementia care

Providers referred to familial, sociocultural, and geographic challenges that can affect the availability of in-home and community-based medical and nursing care. This quote was from a rural participant:

We've had clients who've come home from the hospital unable to get the drops in their own eyes and were told to get a neighbor in. Well, they don't know their neighbors any more … they don't have family close by … if we don't help it doesn't get done.

Another rural participant asserted that a rural setting may enable the client with dementia to remain at home for a longer period of time due to community support. However, service access may be facilitated at an earlier stage of the illness in an urban setting:

In an urban community, you can't rely on the people at the store to take care of you. The cashier is just letting some of these people through or holding the line while you're holding the money or change. I can see the frail elderly with any, underlying dementia being very quickly labeled as having a problem and maybe getting attention sooner. But if it's the local, little, rural community store, you can rely on that fact they'll take care of you even when you can't always articulate your needs anymore.

Essential Facilitators of Supportive Home- and Community-Based Dementia Care

Participants described how the development of infrastructure within an integrated system of publicly funded health and social elder care services can foster informational and emotional caregiver support. Positions such as clinical nurse specialists and resource and referral coordinators can facilitate caregiver empowerment and dementia care capacity building. These supports may enable caregivers to navigate and transition across the continuum of dementia care. Resource coordinators who work with geriatricians can provide the opportunity for clients and caregivers to ask questions during the diagnostic and subsequent phases of the illness. Service bridging strategies can also assist family caregivers. One urban informant shared that

Psycho-geriatric resource nurse specialists in geriatrics do a lot of work in long-term care, case-based consulting, education, referral, and network development. A community initiative also brought together therapeutic recreationists to talk about dementia—[for people with dementia] and to share their expertise.

Formal care providers identified that the support of a physician is critical to augment the quality of dementia care. One participant speculated, “Doctors would be key in encouraging caregivers to accept services, respite, and day services. Doctors carry a lot of credibility with caregivers—if they say the caregiver requires service they will seek the service.”

Participants also identified partnership opportunities to facilitate the integration of home- and community-based dementia care within the broader health care system. For example, health boards that are accountable for the availability of services within a defined geographical region could establish “critical partnerships with elder care services and agencies.” One focus group described how an advisory committee partnered with a regional health board to inform decision making regarding services for seniors' health and social care:

The Elder Services Advisory Committee is made up of region-wide service sector providers, and also members of staff from the health region. They meet on a monthly basis to look at seniors' issues and make recommendations to the regional board in the area of health and social services. It's a way of keeping regional counselors up to date on pressing issues related to seniors in the health region.

The advisory council and health board consultation process also resulted in recommendations for fiscal resource use to enhance the availability of long-term and outreach services. These services may include day programs, behavior assessment and stabilization, nutrition counseling, “intensive support in the later stages of cognitive impairment,” and support for the grieving process for the ongoing physical and cognitive decline of the person with dementia. Early interdisciplinary team assessments, domiciliary visits by a geriatrician, and home supports facilitated by a proctoring support worker who provides support and crisis intervention through a team of community mental health services were suggested as opportunities to enhance the availability of home- and community-based dementia care. Interdisciplinary team approaches to dementia care have benefits for formal care providers, as well as care recipients and informal caregivers. Such teams build on the strengths of individual team members, who provide support for each other: “The support of your fellow workers is very important … you hear the client experiences they have had in similar situations, and [you] just kind of draw on their support and their input.”

Participants also advocated for several continence promotion strategies, including continence clinics that provide full assessment and treatment services for care recipients who experience symptoms of incontinence. Health promoting efforts could then be undertaken to prevent skin breakdown, falls incurred trying to reach the toilet, and the consequent costs associated with acute and long-term care admissions. Additional suggestions offered to improve the quality of home- and community-based dementia care included expanded weekly bathing opportunities at long-term care facilities, consistent application of day center admission standards, development of specialized day programs to meet clients' needs related to cognitive impairment, dementia care education for formal providers and family caregivers, innovative respite options including more evening and night care, and staff allocation to accompany clients for medical consultations and tests.

Assistive housing, that is, the provision of support services for activities of daily living and monitoring of client safety within a living facility, could address the sociocultural issues associated with dementia care. Clients may be linked with social support networks such as church groups in which dementia care access information occurs by “word of mouth.” Concluding participant responses identified that family managed care, underpinned by a home care assessment for required services, may be most beneficial if the family member is employed or the care recipient is in the early stages of dementia. The value of family managed care is premised on the responsibility of the family to self-direct allocated home care funding to hire nonprofessionals and para-professionals to provide in-home care.

Acceptability of Home- and Community-Based Services

The theme of Acceptability of Home and Community-Based Services is defined as the providers' perception of the quality of home- and community-based care for persons with dementia. The first subtheme of Acceptability, titled Essential Components of Dementia Care, includes (a) provision of comprehensive personal care; and (b) use of professional practice knowledge to inform in-home medication management, and “cuing in” to the complex nature of bathing. The second subtheme titled Service Challenges includes (a) inadequate service time to provide physical care and socioemotional support needed by the client and caregiver; (b) caregiver, client, and provider difficulty in navigating the care system; (c) lack of system coordination; and (d) financial costs of services.

Essential Components of Dementia Care

Provision of comprehensive personal care

Personal care was defined by home care workers as care needed for daily personal hygiene, mobility, and continence promotion: “We assist with all aspects of personal care, including denture cleaning, shaving, cleaning their glasses, putting them to bed, getting them out of bed, dressing them, pad change, continence care, taking them to the bathroom.” All home care providers asserted that personal care “has to stay” as an essential home care service so that clients can continue to live at home. If in-home personal care and support are not provided, family caregivers will not be able to sustain in-home efforts to care for their family member with dementia. The exhaustive demands of caregiving and the implications of not receiving in-home support were described in the following transcript excerpt:

It's amazing how people struggle behind closed doors. A lot of times the caregiver is as old or older than the client and they're tired. If the caregiver has to get up several times a night to look after a wandering partner or deal with someone who's fallen, they wear out. And if we're not in there, they are going to wear out quicker.

Professional practice knowledge

Nurse participants provided insight into how their practice knowledge underpins approaches to dementia care, such as in-home medication monitoring. The complex nature of medication administration was described as an assessment of the client's dexterity to open the medication package, the client's cognitive awareness of time so that the medication was taken at the prescribed time of day, and the need to secure the medication in a locked area if the client was not able to determine the correct time or type of medication. Regular ongoing assessment of the client's overall physical and cognitive status also occurred to determine the need for additional support services or referral to long-term care:

From a nursing standpoint, we're in there to assist them with medications, whether that be helping them with taking their medications out of a blister card or we'll have those medications locked up because they get confused and they don't know what day it is. We really watch and see whether they need that assessment and referral to long-term care.

Cuing the bathing process

Nurses advised that a specialized professional knowledge base is needed to appraise the multiple cognitive, behavioral, and personal (e.g., shyness) factors that may influence the bathing process for a person with dementia and caregiver support needs. Home care nurses described bathing as a complex physical and socioemotional process for the care recipient, caregiver, and home care provider. The bathing process is further exacerbated by the symptoms of dementia such as impaired judgment and problems with depth perception. Without an understanding of the complexity of bathing, it may be viewed as a task-focused endeavor. Therefore, it will be difficult to comprehensively implement strategies that enhance dementia care quality. Specifically, strategies are needed for the implementation of bathing protocols and the emotional support of the caregiver and care recipients related to privacy needs:

Bathing at home can be complex, because that is something people remember until close to the end and that's when the guard goes up. The person with dementia is inclined to let someone help them brush their teeth or wash their face, but the bathing is so much more personal. Tell the person with dementia to undress and they are lost so it takes a while to learn how to address the bathing process and that's often what the family needs help with.

Moreover, the need for bathing is often a criterion to receive home care services. Indeed, the person may be denied home care if they or the caregiver cannot articulate a bathing need. Recommendations were made for professional assessors to “cue in” to the need for bathing through holistic, sensitive, and flexible assessment skills. Lack of cuing in can occur because in-home assessments may not be conducted by professionals with knowledge of dementia. In addition, assessors need to apply flexible criteria through more in-depth assessments for bathing to assist the caregiver in articulating the need for bathing assistance. One participant advised the following to enhance the provision of home care services:

Clients sometimes fool an assessor: they often seem to be better than they are to the primary caregiver. Clients don't always have professional eyes in there making decisions. Assessors should not simply ask the person with dementia “Do you need a bath” because of course they are going to say no. Assessors can support the caregiver to say, my spouse needs cuing in to be able to get washed, that is enough to allow them to have services.

Challenges of Providing In-Home Care

Time for in-home care

Formal providers voiced that it was imperative to allocate sufficient service time to address aspects of advancing dementia symptoms, transportation arrangements, and continence care. The following quote demonstrated the time required by a formal provider to assist a client to prepare for an out-of-home appointment:

As my clients get progressively more difficult, whether it be their worsening mobility or their cognitive ability, it's taking me half an hour to get them dressed after they look for their purse, and their keys. I used to look for her keys, oh a good half an hour every time I went, until I got to know all the hiding places.

Continence care represented an intensive time commitment for those with advanced needs:

We have an electric lift and in half an hour, if that person has a bowel movement and the nurses are in to change the duoderm on the pressure sore, there are five transfers. Plus that person has to have time to sit on a commode and try to have a bowel movement. That's a lot for half an hour and you can't hurry a bowel movement in a disabled person.

Providers also conveyed the challenges of limited time to provide socioemotional support to family caregivers to enable them to navigate the care system: “They [caregiver] need a lot of support in moving from wherever they are at. They need support in acknowledging what's happening and support in that it's okay to experience the feelings of difficulty.” Participants articulated that if support cannot be provided to caregivers, the family assumes the blame for the inability to access and mobilize care services: “They feel they did it all wrong.”

Difficulty with system navigation

Several factors contributed to the poor quality and acceptability of in-home dementia care, such as the lack of formal care provider support and information to guide decision-making in the early stages of the disease, and the lack of client and family caregiver understanding on how to navigate the complicated home care system. Participants reported that clients have arrived on the doorstep ready for home care or long-term care admission with no comprehension of the myriad of steps, assessments, reassessments, and consents required for entry into the home- and community-based care system: “The gaps in caregivers' knowledge—they've missed the whole part that could have reassured them, that could have helped them to cope.” Caregivers often access the system through outside avenues.

They [caregivers] have no idea what to do to look after their loved one … . They don't know where to go. They usually find a door into the system by mistake, either through a physician, a church group, or somebody they know. It is not easy to enter the system. People often go to the hospital as that's the door people know to use to get healthcare.

In addition, participants articulated that family caregivers require information to understand terminology unknown to them so that they can comprehend the purpose of the agency or service: “People don't really understand the CCAC [Community Care Access Center]. I think it was easier when it was called home care because people at least knew what that meant.”

Providers articulated that expert approaches, that is, the sole use of professional knowledge, without consideration of caregivers' knowledge, experience, or strengths in the plan of care to access dementia services, is not an acceptable approach to care: “Having control as the caregiver is an important piece particularly as health professionals have the tendency to think that we have the knowledge beyond what the family caregivers and care recipients might have. Therefore, we direct people a lot.” Help Line services were suggested as one empowering strategy that increased the acceptability and quality of services for families by acknowledging the experiential care knowledge and decision-making skills of the caregiver:

Validating the decisions that people make and offering alternatives is one approach that helps to support caregivers where they are and moving to the next stage. The help line assists the person in crisis by helping them look at what's the most important need. We use triggers such as “have you thought about this” so they are not feeling disempowered.

Lack of system coordination

Urban and rural home care coordinators further described the challenges of family caregiver crisis management as being related to a lack of system coordination, delays in home care referrals from health care professionals/services, and issues with inconsistent formal care providers. The ultimate impact on the caregiver caused by a delayed physician referral for home care was shared by a participant: “By the time we get the referral for dementia clients, from the physician, the family caregiver is broken already.” Care recipients and family caregivers may experience difficulty in seeking care due to the lack of a firm diagnosis:

One area of real concern is the early onset period. This is the most difficult stage to deal with and the resources are limited in the field. The early diagnostic phase can be a real complicated sort of maze to go through with no clear testing. The doctor may be struggling with a diagnosis and it is hard for the client to get connected.

Formal care provider inconsistency and the lack of flexibility in care arrangements to ensure a regular care provider may hinder the development of trusting relationships, and promote anxiety and fear for the caregiver and especially for the persons with dementia who may experience severe memory problems:

It's so important with someone with dementia to have consistency of the face in front of you for the feeling of trust. You know it takes time to develop that and you can't if you're getting a different person. That adds to the anxiety of the caregiver. We're so worried about keeping them clean and we're so worried about whether they have their pills, I think another important care need is emotional care. They need to feel not afraid.

Financial costs of services

Costs associated with access to respite, transportation services, and continence supplies constituted quality of care issues for the family caregivers. Moreover, clients and caregivers were reluctant to accept assistance with continence management due to cost and may consequently require more costly services:

The costs of incontinence supplies are huge and so they don't want us in there knowing that because they know that we're going to throw away that Depend instead of putting it over the register to dry out. Therefore they end up with bladder infection and kidney infection and then it is hospitalization.

Other incurred caregiver costs included the fee to access respite through placement in a long-term care facility. One participant offered that “because there are only a certain number of beds and there's a cost,” families cannot arrange for respite services. Transportation fees to day programs and appointments were also identified by providers as unacceptable to clients in that they prevented access to out-of-home services: “You have to get them there in a reasonable time, however, the costs to take them there may prevent that.”

Formal care providers voiced several acceptability issues that impact on the quality of dementia care provided by professional and nonprofessional providers. It is imperative that health care system decision makers are aware that practice knowledge, personal, socioemotional and behavioral care, and sufficient time to deliver this care are key components of home- and community-based dementia care. Fiscal and human resource allocation can then be aligned with formal provider and informal caregiver needs. If key components of home and community care are not made explicit and publicly visible, then it will be difficult to proceed with innovation to improve service acceptability. As one care provider stated, “I don't really know if care complexity is a barrier—probably the lack of resources to deal with complexity is more the issue.”

STUDY LIMITATIONS

The researcher employed maximum variation sampling, a form of nonprobability sampling. Thus, these qualitative findings may not be considered representative of all home- and community-based dementia care settings. However, efforts were made to gain insight into varied perceptions of care by including participants from diverse geographic settings (e.g., rural and urban), programs (e.g., Alzheimer Societies, home care), and formal provider occupational designations (e.g., nurses, therapists, social workers, personal support workers) in three Canadian provinces (Saskatchewan, Manitoba, and Ontario).

DISCUSSION

This is the first study to describe formal care providers' perceptions of their experiences with Canadian home- and community-based dementia care. Emergent themes from the qualitative data illuminate the challenges that formal care providers experience in the provision of available and acceptable home care. An important finding of this study was the use of professional knowledge to “cue in” to the critical aspects of care, such as bathing, required by the care recipient. Indeed, the lack of receiving assistance with bathing may represent a symbol of the difficulty that caregivers experience in navigating system access and referral. In addition, the functional model of nursing care (Smith, Smith, Boechler, Giovannetti & Lendrum, 2006), that is, a scheduled list of tasks such as bathing, and routines that direct the work of the care, may be the most visible form of nursing practice. However, highly complex and iterative in-home care processes are required within the context of multiple client and family service needs, stages of dementia, and professional and nonprofessional practice knowledge. Similar findings were reported in a study that described how the ongoing support of professionals assisted caregivers with in-home bathing for dementia caregivers (Mahoney et al., 2006). Sufficient time for care provider practice sessions with family caregivers may enhance the application of best practices and provide the opportunity for caregiver support for the physiological and cognitive decline of the care recipient. Benner (2001) also asserted that by uncovering embedded nursing practice knowledge, we create awareness within the nursing profession and the public domain about how nurses enact and apply their holistic knowledge base to inform nursing practice and care quality.

The results of this research support the recommendations of other formal care providers as reported by Kushner et al. (2008) and the Health Council of Canada (2008). Formal care providers have indicated that increased resource allocation may enhance availability and accessibility to dementia care by increasing formal provider training, in-home “time for care,” care assessments, and interdisciplinary approaches to home care. The Health Quality Council, an independent agency, has the mandate to monitor the process of health care renewal and to recommend quality improvement initiatives for public system accountability. The Council report revealed that one-quarter of Canadians cared for a family member or a close friend with a serious health issue in the last year, with 22% of these people absent from their place of employment for one or more months, and 41% using personal financial resources during the time of caregiving. Essential home care services are becoming less available through the publicly funded home care system, and greater proportions of those with dementia are turning to the private sector for assistance (Forbes et al., 2008b; Forbes et al., 2006). Those who do not have the financial resources to pay for private services may not receive any in-home assistance.

Lack of a coordinated system of access and referral may also increase isolation and marginality (Aronson & Neysmith, 2001) and service costs (Di Matteo & Di Matteo, 2001) for socioeconomically and disadvantaged caregivers. Family caregivers may be prone to social exclusion and health issues, particularly when assisting older adults with dementia (O'Rourke, Cappeliez, & Guindon, 2003). Rural home care may be the primary service resource to support rural clients' access to care and promotion of health (Leipert et al., 2007). Delays in home care admissions from rural and urban areas may result in the inappropriate use of day centers, acute and chronic care services, and increased cost to the health care system. Ultimately, clients may be subjected to questionable service quality. Eighty percent of Canadians support the enhancement of home- and community-based care to broaden the overall health care system (Health Council of Canada, 2008). Research support does exist for team-based services (Health Council of Canada, 2008; Jansen, 2008) within an integrated community care system (Anderson & Parent, 2000; Forbes et al., 2008b). This study may inform planning and evaluation strategies to reorient the home care system; enhance nursing and interdisciplinary team care; and improve the quality, availability, and acceptability of home- and community-based dementia care.

CONCLUSION

Key findings from this study identified that formal care providers can facilitate caregiver empowerment and system navigation through sufficient time allocation for in-home care, interdisciplinary home assessments, help information lines, and positions such as nurse specialists, service coordinators, and mental health proctors. Partnering with community-based services may also achieve a continuum of essential dementia services from early stage diagnosis, to intensive in-home service models complemented by specialized day programs, client-oriented respite, future palliative care, and specialized care. A comprehensive framework for achieving system integration, client- and family-focused care, and accountability for quality of care across a broad spectrum of health services can be attained by articulating the essential components and processes of home care and “listening to the voices” of home care providers.

This project was funded by the Alzheimer Society of Canada, Canadian Nurses Foundation, Canadian Health Services Research Foundation, Canadian Institutes of Health Research Institute of Aging, and the Canadian Institutes of Health Research Institute of Gender and Health.