1 Literature

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The aging of the baby boomers and the increasing life expectancy at age 65 will accelerate the growth in the number and in the proportion of elderly people over the next three decades. An aging population also means a population where the prevalence of chronic diseases will increase and where social services become just as important, if not more, than the provision of medical services (Carrière and Légaré, 2000). Health and social support are among the most important factors related to quality of life for elderly. When studying the disabled elderly population, the concept of health will necessarily be very different from the one perceived by younger and healthier individuals. Once an elderly person needs assistance in performing activities of daily living (ADLs) and instrumental activities of daily living (IADLs), the concept of health and well-being has to be expanded to include the adequacy of the assistance received. If needs are being met by the formal and/or informal support networks, we would tend to think that quality of life is greater than when needs are not being met. Thus, social services should be considered as a major contributor to the health and well-being of the elderly population (Colvez and Ridez, 1996). Just as reducing to meet the financial need of the elderly population poverty among the elderly population has been a priority for public policy since the 1960s, meeting the required needs for assistance to perform activities of daily living and instrumental activities of daily living should become a major concern of public policy over the next few decades. With the changing nature and extent of the family network, the main component of the informal network, pressure on the formal support network could be much greater in the near future.

1.1 Demographic factors driving future need

Because home care services are more social than medical and are often provided by the informal support network, factors affecting the availability of the informal support network are important to consider for projecting the need for home care services. In fact, most disabled persons receive services from their informal support network – mainly family, but also friends and neighbours. Hébert and colleagues in their study on resources and costs associated with disabled elderly (2001) confirm previous studies in which 70% to 80% of the care of disabled elderly individuals living at home is provided by informal caregivers. Similarly, Lafrenière et al. (2003) found that more than 70% of the hours of services provided to disabled elderly persons at home were attributed to the informal network. Spouses were most likely to be the primary caregivers for elderly persons in need, followed by daughters, daughtersin- law and sons. Siblings who live close by were more likely to help with instrumental activities of daily living as compared to personal care. Similarly, other family members such as nieces, nephews and cousins were less likely to help and the help they provided tended to be for activities like transportation and grocery shopping, and not personal care (Chappell, 1992; Keating et al., 1999). More precisely, it was the adult daughters who assumed the greater amount of caregiving responsibility towards elderly parents (Guberman and Maheu, 2000; Keating et al., 1994). Keating et al. (1994) challenge the assertion that informal care to seniors is provided by what would be defined as a "network". They feel that the informal "network" is often a smokescreen behind which stands a solitary figure, usually female. According to Himes (1992), as the baby boom generations age it is women who have a greater probability of having to provide care for children as well as elderly parents.

Among the many factors that should be investigated to better project the future needs in formal services - considering that the family network is the main provider of assistance - are the living arrangements of the elderly population and the composition of the family network (e.g. spouse, children). Also, there are gender issues that will need to be taken into account in the future.

When looking at living arrangements, it has been found that living alone is a major predictor of use of formal services for disabled elderly (Chappell, 1985). For example, Grabbe and colleagues (1995) found that those living alone were most inclined to use formal services. Likewise, those living with others had the greatest probability of using only informal sources (Carrière et al., 2005). More specifically, those living with their spouse were more likely to rely on their spouse to receive the needed assistance (Walker, Pratt and Eddy, 1995) while childless elderly and the elderly living apart from their children were more likely to use social services than were elderly living with their children (Choi, 1994). One factor that will influence the living arrangement of future seniors is the narrowing gap in life expectancy between men and women. The mortality gap between men and women has decreased since the late 1970s (Nault, Roberge, and Berthelot, 1997) and it may result in fewer older women living alone and greater availability of informal support. If this trend continues, it could, in relative terms, decrease the demand for formal assistance.

The nature and extent of the family network has changed over time and it will undoubtedly go through many more changes over the next few decades. Most parents of the baby boomers had several children. When the parents of baby boomers are in need of assistance to perform their daily activities, they can count on either their spouse or their children. Baby boomers also tend to have brothers and sisters that may be in a position to give them assistance in old age. However, up to now brothers and sisters have not been a major provider of assistance. Spouse and children are mostly the ones providing help to disabled elderly. By being the first generations to limit their fertility below replacement rate (which is 2.1 children per woman), baby boomers have somewhat limited their potential support network. Moreover, their own children will in turn have very few brothers and sisters in addition to having few children of their own. The nature and the extent of the family network are therefore likely to change as the population ages (Stone, 1993). Furthermore, an increasing divorce rate could affect the availability of informal support. Studies tend to show that disabled divorced elderly in need of assistance to perform daily activities might have difficulties in finding the support they need within their social network (Connidis and McMullin, 1994; Martel and Légaré, 2000). Also, relationships that end in divorce may distance parents from their children. For example, it was found that divorce can induce a more negative impact on adult children/parents relationships than widowhood, especially in the case of child/father relationships (Carrière and Martel, 2003; De Jong Gierveld and Dykstra, 1997; Harris and Furstenberg, 1995; Kaufman and Uhlenberg, 1998; Pezzin and Steinberg Schone, 1999). Barrett and Lynch (1999) found that among divorced elderly persons, women were more apt to receive support from their children than men. Moreover, it was found that children had even less contact with their biological father if he remarried (Bulcroft and Bulcroft, 1991).

Finally, gender is a critical factor when projecting availability of informal support. For example, as noted above, the narrowing of the mortality gap between gender should tend to lower the demand for formal assistance. On the other hand, daughters and daughtersin- law are high on the list of potential providers of informal assistance to disabled elderly. The majority of female caregivers aged 45 to 64 are also working at a job or business (63%), most in a full time capacity (Cranswick, 2003). Now that women are full participants within the workforce they may not want to retire partially or totally in order to provide daily assistance.

1.2 Utilization of the formal network

The formal network may be an integral part of the total support system, but in comparison to the informal network it provides significantly less amounts of care to elderly persons living at home. As mentioned above, when looking at the total number of hours of services being provided in 1996, Lafrenière et al. (2003) found that for four activities mostly linked to home care support, more than 70% of hours had been provided by members of the informal network. Also, in 2002, 39% of senior women and 46% of senior men received all of their care from informal sources (no change from 1996). At the same time, the proportion of older adults who received care from formal sources alone fell from 31% of women to 25% of women, with no change for men (Cranswick, 2003).

Some studies examine the characteristics of caregivers and care recipients who utilize formal services to determine whether there are predisposing factors that predict service utilization. Differences in the type of linkage between formal and informal supports are accounted for by key variables: caregiver gender, living arrangements, level of physical impairment and carerelated health changes in the primary caregiver (Noelker and Bass, 1989). Kosloski and Montgomery (1994) report that the predisposing variables of the elder's age and the relationship with the caregiver were better predictors of activities of daily living services compared to instrumental activities of daily living services. Functional limitation has been found to be the best predictor of formal home care services (Grabbe et al., 1995; Tennstedt, Crawford and McKinlay, 1993; Wan, 1987). Other research has found that the number of hours of services being provided by the formal network is positively associated with functional limitations. However, this relationship was not significant for those receiving only informal assistance (Lafrenière et al., 2003). This result would seem to underline the fact that the relationship between care recipient and caregiver differs quite significantly in a formal setting versus an informal setting. Among other predisposing factors, age of care recipient also comes into play. Data released from the 2002 General Social Survey indicate that the majority of seniors aged 65 to 74 received all of their care from informal sources. By the age of 75, especially for women, family and friend care was supplemented or replaced by care from formal sources with the reliance on a mix of care increasing with age (Cranswick, 2003).

In addition to these characteristics, research in the area of rural aging suggests that utilization of formal services may be impeded by the limited availability of these services in rural areas compared to urban areas (Keating, 1991). Analysis of the 1996 General Social Survey presents data which questions this assumption. Keefe (1999a) found that rural elderly were as likely to receive assistance or use formal supports as their urban counterparts.

Finally, other research examining the linkages between informal and formal support has focused on understanding whether formal services substitute for or complement tasks provided by informal supports (Cantor, 1979; Cantor and Little, 1985; Chappell, 1992; Litwak, 1985). Using 1996 data, Lafrenière et al. (2003) found that there was no significant relationship between the number of hours provided by the formal network and the hours provided by the informal network, meaning that an additional hour provided by the former did not significantly reduce the number of hours provided by the latter. This result does not support the substitution theory, but instead seems to indicate that formal support complements tasks provided by the informal network.

1.3 Continuing care policy issues

Currently, there is no national policy addressing family members caring for disabled elderly in Canada; all community care policies governing home care programs are under provincial jurisdiction. Services provided by the formal network to assist elderly persons to remain in the community are provided through government-sponsored home care programs or through private enterprises. Publicly-funded home care programs exist in every province and territory in Canada and their expenditures have increased over 100 percent in the late 1990s (Health Canada, 1998). Previously, institutionalisation was a popular way of taking care of disabled elderly persons. The primary reason for this changing policy was tied to the high cost of caring for someone in an institution while in many cases services could have very well been provided through home care.

The notion of cost-effectiveness of home care for chronic care needs of the population is mostly related to three factors. First, capital expenses are lower in the home since governments are not in the business of providing the capital expense for the building/shelter costs. Second, the majority of the workers in home care are para-professionals and they are generally underpaid compared to their hospital/long term care facility equivalents. Finally, as was said before, informal caregivers provide the majority of the care.

Today, community care policy looks like a good way of limiting the increasing expenditures related to an aging population. However, Hébert and colleagues (2001) are more cautious when looking at the lower cost argument in favour of home care. They agree that generally, care at home and in intermediate facilities is less expensive than care in nursing homes. However, the argument does not seem to hold when looking at severely disabled people. There would seem to be a limit to the efficiency of home care, especially for those severely disabled people. Moreover, within the post acute care home care model, evaluation of the total system costs have not provided definitive cost savings – particularly if costs such as the impact on the informal support system are factor in (Hollander and Chappell, 2002).

There are a number of issues related to the increased pressure to shift care from institutions to the community as a way to cut costs. For example, the home care industry underwent, in recent years, significant system changes including increased privatization of care provision, increased competition and growth of large and often complex organizations (Close et al., 1994). The way in which home care services are organized is also undergoing changes. Labour restructuring, in terms of a growing number of contract and part-time workers, is occurring as is increased medicalization of home care services (Close et al., 1994; Keefe, 1999b).

Central to this policy discussion is having adequate human resources to carry out front line services. This labour force is often described as having limited training, low wages, few benefits, and limited supervision. In the US, the availability of these home help aide or home support workers is decreasing and the possibility of shortage of workers looms in Canada as well. In Canada, the challenge in home care labour varies provincially as public home care programs are under provincial jurisdiction with the exception of services offered through the Departments of Veteran Affairs and Indian and Northern Affairs (Keefe, 1999b). Until recently there has been only limited attention to researching Canadian home care workers. A sector study on home care was the first national-wide approach to understanding human resource issues, both paid and unpaid, in the delivery of home care services (Canadian Home Care Sector Study Corporation, 2003).

Finally, gender is an important contextual variable in the discussion of human resource issues in home care, either within the formal or the informal network. The majority of these home care workers, both professional and non-professional, are women. The low wages and limited benefits which characterize their employment may be understood in the context of women's underpaid labour generally, and specifically the undervaluing of work performed in the private sphere of the home (Baines, Evans and Neysmith, 1991). Bornstein (1994) argues that the caregiving dilemma goes beyond the fiscal dilemma of expecting women to provide unpaid and underpaid care and suggests the core problem is how we value seniors in our society and the government's responsibility to provide adequate care.

1.4 Summary

Demographic changes in the Canadian population in tandem with changes in the composition of informal network will likely have a significant impact on the need for formal support in Canada. There is not necessarily a demographic crisis in Canada because of the aging of the population, but the arrival of the baby boomers raises new challenges. It is critical that more attention be given to understanding the impact of these changes and for what type of policy changes need to be considered.

This study has allowed us to evaluate the impact of the potentially decreasing availability of informal support – mainly looking at decreasing fertility and the changing nature of living arrangements – on the use of formal services. Of course, we also had to make projections on the number of elderly persons who would potentially be disabled in the future while making assumptions on rates of institutionalization, as those living in an institution do not require home care services. Findings are discussed in terms of their impact on the future reliance on the formal home care system. As any projections, they should not be regarded as predictions, but as a tool to better understand what lies ahead if patterns of use of formal and informal assistance remain constant.