Exploring the Balance Between Informal and Formal Care in the Community-Cased Elderly
The aging of the Canadian population presents a significant challenge to policy makers and health care professionals concerned with ensuring the delivery of comprehensive, high quality services to older persons over the coming decades. In 1991, 9.1 percent of the Alberta population was 65 years and older, representing 230,550 seniors. It is estimated that this proportion will increase to 14.1 percent (496,600 seniors) by 2016. Of particular concern are projected estimates for the increase in number of older persons with disabilities.
Concurrent with these demographic changes, health system reform and financial constraints in Alberta have resulted in significant reductions in hospital beds and length of stay and a trend away from institutional care to care provided in the community. Since 1991-92, acute-care hospital discharges per 1,000 population have declined by 21.5 percent while the number of short-term, home care clients per 1,000 has increased by 58 percent. Between 1993/94 and 1996/97, the number of Albertans receiving home care services increased from 55, 654 to 67,941 persons.5 Further, over the last seven years, public home care expenditures in the province have increased from $55.4 million to about $149.3 million, representing approximately 2.8 percent of total public health spending in 1997/98.6,7 Such growth reflects the increase of acute, rehabilitative and long-term care services being provided in the home setting, a trend that has been facilitated by significant advances in health care technology in recent years.
These changes in population demographics and health care delivery, in Alberta and across Canada, have led to increased attention on issues surrounding the determinants, cost-effectiveness, integration and quality of community care services for the elderly.8,9 Clearly, efforts to further understand the distribution and determinants of formal home care and informal service use are essential for program planning and policies concerned with meeting the demands of an aging population in a cost-effective manner. In response to these concerns, we examined preliminary data regarding the relative distribution of informal and formal care use among 330 elderly home care clients from two health regions in Southern Alberta. We also explored whether the relative distribution of formal and informal care use varied significantly according to client (e.g., physical and cognitive impairment, extent of social support) and caregiver (e.g. level of care burden) characteristics. The data examined in this investigation are based on a larger home care study on medication compliance involving the administration of the newly developed Resident Assessment Instrument for Home Care (RAI-HC).
The Resident Assessment Instrument for Home Care (RAI-HC)
One deliverable of the IHIS sub-study was the development of guidelines for clinicians on how to use data from a previous MDS assessment when completing intake assessments. The preliminary recommendations of the RAI-HIP team in this regard are provided below. The transition from home care to a long-term care facility was used as the context for these recommendations; however, most of the principles underlying these specifications would also pertain to other transitions.
A prerequisite for the ongoing evaluation of home care services for the elderly is the availability of standardized, comprehensive, and relevant client-specific assessment data collected on a longitudinal basis. Recently, several provinces across Canada, including Alberta, have supported initiatives to pilot test a home care assessment tool based on the Resident Assessment Instrument for Home Care (RAI-HC) developed in the United States. The RAI-HC includes a minimum data set (MDS) as well as specific care planning guidelines. It provides a comprehensive and standardized in-home assessment of clients' sociodemographic (age, sex, education, primary language, social support), physical (ADL and IADL, vision, hearing) and cognitive status, psychological and health conditions, formal and informal service use and use of prescription and over-the-counter drugs. The reliability and validity of this assessment tool has previously been established in several countries, including Canada.
The RAI-HC represents one of a series of resident assessment instruments (RAIs) being developed to provide standardized patient-specific data across acute and continuing care settings for the elderly. As well as providing reliable and valid clinical data required for care planning, the MDS data collected with the RAI may also be used for case-mix based funding allocation and monitoring of quality of care across care settings. Thus, the RAI instruments provide a unique opportunity to create an integrated information system, thereby improving quality and enhancing the "seamless" delivery of care.
The Alberta RAI-HC Study (RAI-HC)
The MDS-HC data examined in the present analyses were collected as part of a comprehensive longitudinal investigation of the determinants and consequences of medication compliance among urban and rural home care clients residing in two health regions (Calgary and Chinook Health Regions) in Southern Alberta during April 2000 - May 2001. In each region, two nurses (working with the respective home care programs) were hired and trained to administer the RAI-HC according to a standardized 2-day training protocol.
Subjects were recruited from random samples stratified by rural versus urban residence. The final sample included 330 elderly home care clients, 165 from rural settings and 165 from urban areas. Rural clients represented those living on a farm, acreage or in a village or town (with a population less than 10,000) and residing greater than 35 km from a major urban centre (cities of Calgary or Lethbridge). Only home care clients currently receiving services under the jurisdiction of their respective health authority were eligible for study participation, thus home care clients receiving private services were excluded. Other selection criterion included age 65 or greater and provision of informed consent from either the subject or a legal guardian.
The MDS-HC items examined in this investigation included measures of clients' sociodemographic, physical and mental health status, and service utilization. We included three index measures previously developed and validated for use with MDS instruments based on subsets of items in the MDS-HC with moderate to high interassessor reliability estimates: the MDS Cognitive Performance Scale (MDS-CPS),13 the MDS ADL self-performance hierarchy scale14 and the MDS Depression Rating Scale.15 The MDS-CPS, a hierarchical index used to rate cognitive status, ranges from 0-6 with higher values reflecting more severe cognitive impairment. The MDS-ADL selfperformance hierarchy scale is based on four ADL items (personal hygiene, toileting, locomotion and eating) and ranges from 0-6 with higher values representing greater ADL dependence. The MDS-Depression Rating Scale, derived from mood and behavioural items, ranges from 0-14 with a cutpoint score of 3 representing the presence of mild to moderate depression. Additional MDS-HC items relevant to the nature of the primary caregiver-client relationship and the extent of caregiver burden were also examined.
Measures of service utilization examined from the MDS-HC included the total number of hours of informal and formal services received by clients over the past week, including weekends. Formal services include home health aides, visiting nurses, homemaking services, meals, volunteer services, physical, occupational and speech therapy, day care or day hospital and social worker in the home. Hours of informal IADL and ADL support provided by family, friends and/or neighbours during the past 7 days were estimated by questioning the client and caregiver.
Given the skewed distribution of informal and formal service use data, analyses of the associations between client and caregiver characteristics and mean hours of service use were problematic. Consequently, to examine characteristics associated with the balance of informal and formal care use, we created a summary measure based on the ratio of formal / informal care hours among clients reporting 1 or more care hours.
This summary measure resulted in two categories:
- Clients with a greater proportion of total care hours from informal sources (Informal > Formal Care)
- Clients with a greater proportion of total care hours from formal sources (Formal > Informal Care)
Characteristics of the Home Care Sample
As shown in Table 1, the mean age of the sample was 83 years and most clients were female (79%) and not married (72%). A majority of clients (58%) had completed less than 13 years of education. The most common living arrangement was residence in a lodge (37%), followed by residence in a private home with others (34%) and in a private home alone (29%). Approximately half of home care clients reported that their primary caregiver was a child or child-in-law. The next most common responses for primary caregiver included spouse (20%), other relative (13%) and friend or neighbour (11%). Few clients (2%) reported the absence of a primary caregiver.
The most common disease diagnoses present among clients were: musculoskeletal disorders (66% - including arthritis, hip and other fractures, osteoporosis); heart and circulatory diseases (61% - including congestive heart failure, coronary artery disease, hypertension, irregular pulse, peripheral vascular disease); neurological disorders (25% - including Alzheimer's disease and other dementia, head trauma, hemiplegia, multiple sclerosis, Parkinsonism); and stroke (16%). Only a small percentage of clients (11%) showed moderate to significant dependence in ADL (ADL score ³2). Just over a quarter of clients reported having had a recent fall and approximately 30% reported a recent hospitalization and/or emergency room visit. Approximately 23% of clients showed moderate to severe cognitive impairment (CPS ³2) and 17% exhibited symptoms of mild to moderate depression (DRS ³3).
Informal and Formal Service Use
Data regarding clients' informal and formal service use (hours in the past 7 days) and caregiver burden indices are presented in Table 2. The average number of informal care hours reported for the sample was 13.4 (sd 21.4) and the average number of formal care hours reported was 27.4 (sd 26.9). As illustrated by the standard deviation and median values, the distribution of informal and formal care hours was heavily skewed (with a relatively large proportion of clients reporting only a small number of hours). However, the majority of clients received at least some assistance from informal (86%) and formal (94%) care sources. Only a small percentage of clients reported receiving only informal care (5%) or only formal care (13%). Also, only 4 clients (1%) reported no utilization of either informal or formal services in the past 7 days.
Data regarding the presence of potential caregiver burden suggest that although few primary caregivers expressed feelings of distress, anger and/or depression (9%), a relatively large proportion indicated that they were not able or willing to further increase their assistance with clients' emotional (40%), IADL (46%) or ADL (70%) care. In addition to having a primary caregiver, a large percentage of clients (72%) reported having a secondary caregiver available for assistance with IADL and ADL activities.
The Balance between Informal and Formal Care and Associated Characteristics
Table 3 presents the relative distribution of informal/formal service use (based on our summary measure calculated from the ratio of formal/informal care hours) according to select client and caregiver characteristics. Clients receiving more formal than informal care hours were significantly more likely to be aged 85+ years, female, not married, living in a lodge, to have higher education, to report a child/child-in-law or other relative, friend or neighbour as a primary caregiver, to not have a neurological disorder and to exhibit no or little impairment in ADL and cognitive functioning. Although not statistically significant, clients with more formal than informal care hours were also more likely to be from an urban setting. Recent hospitalization or a visit to an emergency room was not associated with a greater likelihood for more formal than informal care hours.
Clients with more formal than informal care hours were also significantly more likely to have primary caregivers who reported that they were not able or willing to further increase their level of assistance with areas of emotional support, IADL and ADL care. This group of clients was also significantly less likely to have a primary caregiver reporting feelings of distress, anger and/or depression.
Implications for Public Policy and Future Research
Population aging and recent social trends (e.g., smaller families, migration of family members, and increased involvement of women in the workforce) have re-focused ongoing concerns about the potential withdrawal of informal (unpaid) care in response to increases in public home care services and expenditures.16 This issue, commonly referred to as the 'substitution' hypothesis, has received very little support from recent empirical data. In fact, research to date suggests that formal (paid) community care services complement, rather than substitute for, informal care by family and friends.16,17 In the limited cases where substitution of formal services for informal care does occur, data suggest that such substitution is only temporary (e.g. during a change in primary caregiver). Our data, based on a sample of 330 urban and rural elderly home care clients in Southern Alberta, indicate that very few clients received assistance with IADL and ADL care solely from formal home care services. Although 94% of clients reported at least some formal service use, most of this group (86%) also reported assistance with IADL and ADL care from family, friends and neighbours. Further, most clients in our sample reported having a primary and a secondary caregiver available for assistance with their day-to-day care and functioning.
One potential interpretation of our data is that recent increases in public home care services and expenditures in Alberta have enabled informal caregivers to continue their care of more complex clients, thereby allowing clients at risk of institutionalization to remain in community settings. However, the natural concern that follows from such an interpretation is whether this has resulted in increased care burden and associated health risks for primary informal caregivers. Among primary caregivers in our sample, approximately 9% reported having feelings of distress, anger and/or depression. Although this appears to suggest that only a few caregivers were experiencing some stress in response to their caregiving activities, a relatively large proportion of primary caregivers appear to be at their limit with respect to willingness and ability to further increase their hours of care. In particular, about 70 percent of all primary caregivers reported that they were not able or willing to increase their hours of ADL care. This is likely a reflection of the magnitude of the care burden already faced by many primary caregivers rather than an indication of caregivers' reduced willingness to provide care in response to the increased availability of formal services. However, given the crosssectional nature of our data, more comprehensive longitudinal analyses of the relative changes in informal and formal service use and associated caregiver outcomes are required.
As expected, clients receiving more formal than informal care hours were significantly more likely to be older (aged 85+), female, not married, living in a lodge, and to report a child/child-in-law or other relative, friend or neighbour as a primary caregiver. Given that a large proportion of informal care is typically provided by the spouse (and generally, the wife), it is not surprising that clients receiving more informal than formal care hours were significantly more likely to be younger, male and to report a spouse as their primary caregiver. Recent research indicates that women are more likely than men to remain in the primary caregiver role even when they start to experience declines in their own health and functioning.
Perhaps less expected was the finding that clients receiving more formal than informal care hours were less likely to have a neurological disorder or impairment in ADL and cognitive functioning. This may reflect the type of care (e.g., supervision) being provided to clients with dementia and functional impairment by primarily informal care sources. However, to better understand the nature of these associations and implications for public policy, we plan to extend our analyses to include longitudinal data from our home care sample and multivariate models to adjust for potential confounding factors.
Although preliminary, our analyses are consistent with previous research and further support the need for additional investigations of the impact of recent sociodemographic trends and community care policies and programs on the utilization of informal and formal care services among the frail elderly. Such efforts should include an examination of the impact of any recent changes in service provision and utilization and client characteristics on the care burden and adverse outcomes experienced by primary informal caregivers. In addition to the clinical, quality and funding applications offered by the RAI-HC assessment instrument, our preliminary analyses clearly demonstrate that the RAI-HC includes the diversity of assessment items required to address a number of important questions concerning formal and informal care in the community. Although preliminary, our analyses are consistent with previous research and further support the need for additional investigations of the impact of recent sociodemographic trends and community care policies and programs on the utilization of informal and formal care services among the frail elderly. Such efforts should include an examination of the impact of any recent changes in service provision and utilization and client characteristics on the care burden and adverse outcomes experienced by primary informal caregivers. In addition to the clinical, quality and funding applications offered by the RAI-HC assessment instrument, our preliminary analyses clearly demonstrate that the RAI-HC includes the diversity of assessment items required to address a number of important questions concerning formal and informal care in the community.
We wish to acknowledge the following persons for their significant clinical and administrative contributions to the success of the Alberta RAI-HC study: Dr. Vernon Jubber (Vice President Medical Services - Chinook Health Region); Deanna Eldridge RN (Health Care Analyst, Seniors Health Program - Chinook Health Region); and Donna Stelmachovich RN (Senior Program Director, Seniors Health - Chinook Health Region).
We are also most grateful to the four home care nurses (Michelle Copeland and Sue Couchman from the Calgary Region and Bonnie Matson and Trudy Harbidge from the Chinook Region) for their data collection efforts and clinical input on the RAI-HC home care study. We also wish to thank the members of the RAI-HC research team (Dr. David Hogan, Dr. Scott Patten, Dr. John Hirdes, Dr. Jeff Johnson, and Lori Romonko-Slack) for their helpful comments and suggestions.
A special thanks is also given to the 330 home care clients and their caregivers (formal and informal) who graciously gave of their time to participate in this important study. The RAI-HC study/initiative was supported by an unrestricted grant from The Merck Company Foundation, the philanthropic arm of Merck & Co. Inc. Whitehouse Station, New Jersey, USA to the Institute of Health Economics.