Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges

Canada needs a comprehensive strategy to support family caregivers, who bear a disproportionate share of the cost of assisting those with long-term disabilities.Le Canada doit se doter d'une strategie globale de soutien aux proches aidants, qui assument une part demesuree du cout des soins fournis aux personnes souffrant d'incapacites persistantes.Demographic, socio-economic and political trends throughout the developed world are making caregiving an increasingly important public policy issue. Population aging and rising disability rates at all ages mean that escalating numbers of Canadians need help from family members and friends with daily living tasks such as housekeeping, meal preparation, yard work and home maintenance, transportation, personal and medical care, money management, monitoring, care management, and social support. At the same time, smaller and more geographically mobile families with more complex and ambiguous structures, together with concerns about escalating costs in the health and continuing care service sectors, are constraining the supply of care. Efforts to encourage more labour market participation and to extend the working lives of Canadians, as well as the loss of retirement savings on the part of many Canadians, further suggest that many individuals and families will need to continue to manage both paid work and care work well into the future.Although caring for family members and friends is a normal midlife experience, there is increasing recognition both of caregiving's potential to affect the life course of caregivers profoundly and of the limits to the care that family and friends can provide. Research has shown that the financial, health and social consequences of caregiving can substantially increase the risk of poor caregiver outcomes and caregiver burnout. Moreover, these effects can accumulate and intensify over the lives of adult caregivers and spill over to other stakeholders, such as employers and public service providers, thus jeopardizing the sustainability of the public care sector and affecting both the labour force and employer's profits.As Keefe (2011, 15) notes, "the current system of supports for family and friend caregivers is limited and inconsistent. " Despite repeated appeals, there is still no comprehensive public policy strategy for supporting caregivers.1 Indeed, government involvement has been slow to evolve. Home and continuing care services that are subsidized in whole or in part for some care recipients might support caregivers indirectly, but pressure on health care budgets means that these services are tightly rationed. Similarly, tight eligibility criteria for monetary benefits exclude the majority of caregivers. And although employers are becoming more aware of the implications of having employees with care responsibilities in their workplaces, few consider it a high-priority human resource management issue. In fact, most employers are convinced that flexible working options available to all employees are sufficient to meet the needs of caregiving employees (Lero et al. 2012). In this study, I address the following questions:* What financial risks do caregivers face? * What are the financial risks for employers and the labour force more generally? * What are Canadian governments and employers doing to address these risks? * What other options are available to governments and employers? In answering these questions, I have relied largely on findings from several of my own research projects, including a comprehensive review of the literature on care-related costs to caregivers and employers (Keating, Fast, Lero et al. 2014; Keating, Lero, Fast et al. 2014), empirical studies of these costs and their predictors (Fast and Dosman 2014; Fast, Dosman, Lero et al. 2013; Fast, Lero, DeMarco et al. 2014) and a study of workplace supports for employed caregivers (Lero et al. 2012). 2 Where Canadian data are absent or limited, and in discussing ways forward for Canadian public policy and workplace strategies, I call on findings from the international literature as well. …