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Transition Spring 2011  Vol. 41 no. 1

for Families About Families

Families Caring The Vanier Institute of the Family

transition spring 2011 • 1


Editor’s Note

H

ere at the Institute, we rarely speak about families without acknowledging their incredible diversity: no two families look the same, make the same decisions or face the same challenges or opportunities. And yet, something equally compelling unites families with a common purpose: care giving and receiving. It is difficult to think of a family dynamic that doesn’t involve caring in some shape or form. Whether it is preparing a meal, supervising homework, earning an income or managing in-home care support, caring is at the heart of what it means to be part of a family. Caring is complex. It may be offered out of a sense of responsibility and obligation, out of affection and desire or both. Sometimes it is not offered at all, to the detriment of everyone involved. Understanding the varied ways that care is given and received by families, friends and communities is central to our capacity to support Canadians throughout the life course. This issue focuses on aspects of family care work as it relates, in particular, to seniors and those approaching end of life. To start us off, Terri Lobsinger explores the private and public costs and consequences of eldercare provided by seniors for seniors. The majority of

Canada’s informal careforce supporting aging Canadians is comprised of other aging Canadians, largely members of kin networks, and predominantly women. This piece makes it clear that the needs of seniors as both care providers and recipients beg immediate public policy attention. Equally important are the needs of mid-life Canadians often struggling to balance the care demands of children and aging parents or frail family members with additional work and life responsibilities. In her piece, Caring and Kinscripts, Professor Susan McDaniel examines the challenges faced, in particular, by the women in mid-life families who are shouldering the bulk of the caring responsibilities. To round out the issue, Professor Katherine Arnupp takes us on a heartfelt journey into the experiences of a group of men and women who offer care support as hospice volunteers to those facing the end of life. Using their voices, this piece speaks to the power of caregiving at this powerful point of transition to transform everyone involved.

Jenni Tipper, Editor

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The Vanier Institute of the Family gratefully acknowledges all those who support our work of promoting the well-being of Canada’s families.

Hedvig Henry Thomas & Maureen Byerley Hélène Guindon Wawanesa Insurance James Tremain Robert Armstrong Robert Lewis Doris E. Guyatt David J. Scott

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Transition Verna Bruce President Jean T. Fournier Executive Committee Chair Al MacKay Interim Executive Director Jenni Tipper Editor Lucie Legault Distribution Clerk

Transition is published quarterly by the Vanier Institute of the Family (VIF) for distribution to its members. To become a member, or to find out more about VIF, please see page 14 for contact information. To report a change of address, send your old Transition address label, with your new address, to Vanier Institute of the Family. See page 14 for contact information.

Gail Watson Hyacinthe Breton Brian Edmison Elspeth Ross Carol Fraser Deanna Williamson Kim Colman Laurie Ball Shirley B. Lawrence Judith Maxwell

Spring 2011 Vol.41, No.1 Editorial contributions and comments are welcome. Material for publication is subject to editing. Contact: Jenni Tipper, Editor Transition Telephone 613-228-8500 Email: jtipper@vifamily.ca The contents of Transition may be reprinted or used on radio or television without permission, Howevere, a credit is requested. If in print, please send a copy to VIF. Transition was founded in 1970 ISSN0049-4429 Charitable Reg. # 10816 8337 RR0001 Publications Mail Agreement NO. 0040006500 Return undeliverable Canadian addresses to Circulation Department 94 CentrepointE Drive Ottawa, Ontario K2G6B1 Email: llegault@vifamily.ca

Contents Eldercare: By Seniors for Seniors Terry Lobsinger . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Caring and Kinscripts Susan McDaniel, FRSC . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Caring to the End: The meanings of hospice volunteering Katherine Arnup . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

The Vision of the Vanier Intitute of the Family is to make families as important to the life of Canadian society as they are to the lives of individual Canadians Design and production: phd creative - Peter Handley R.G.D.


Eldercare: By Seniors for Seniors Terri Lobsinger

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t is not surprising that independence, good health and well-being are central goals for senior Canadians and, fortunately, a significant majority are succeeding here. When asked, almost two thirds of seniors self rate their health as good or better. What happens, though, when their health fails? Who will care for seniors as they age and require additional care? What will this care look like and who will assume the costs? This article will endeavour to answer these questions first by acknowledging that eldercare practices are as diverse as the needs of Canada’s seniors. As care recipients and care providers, seniors are a very heterogeneous group. This complexity begs an equally multifaceted system of care responses to meet the growing range of needs. The types and consequences of eldercare provided by seniors are examined below, along

with a discussion of the interface between informal care and formal care. The article concludes that eldercare by seniors is serious work. The unique needs of seniors doing eldercare deserve focussed attention from Canada’s policy makers. With an aging population, these needs require an immediate and comprehensive policy strategy. To fail to do so would be to fail to live up to our commitments as a nation to set policy that serves the best interest of all Canadians, including our oldest members. Formal or Informal Care Typically, senior or eldercare is categorized as either formal or informal. Formal care refers to the range of medical and/or social services offered by community organizations to address the long-term and chronic care needs of seniors. Informal care mainly comprises personal and social care given to seniors

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by kin and community networks. Currently, a good proportion of informal eldercare is being undertaken by healthy seniors and by other adults between age 45 and 64 - typically members of a kin network and, predominantly female. That said, with the proportion of seniors requiring informal and/or formal home care increasing with age, it is not unusual that seniors and their families struggle to secure care options which do not impose undue hardships, be it financial, emotional or physical. Some seniors fail to secure the needed care altogether. According to Turcotte and Schellenberg (2007), about 84,356 seniors experience unmet care needs for a long-term health problem. For many others, the overall care experience is uneven, despite the provision of informal care by family and friend networks. transition spring 2011 • 1


In general, seniors

with poorer health

receive more formal and informal care, respectively, but seniors who are

satisfied with their family networks

tend to receive more informal care.

Is it fair to suggest that these disparities represent a care crisis for the elderly? If yes, what might this mean in public policy terms? What is the appropriate mix of programs and services to best support the provision of care, both publically and privately, particularly with respect to the very old and frail, and those who have little or no access to informal care? To address these questions, let’s first look at the data. According to the 2007 General Social Survey, senior care recipients represent 5% of the total adult population over age 45, and comprise just under half (46%) of the total care recipient population. Seniors are twice as likely as other adults to receive care (15.8% vs 8.8%). Senior caregivers, on the other hand, represent 7.65 % of the total adult population over age 45 and comprise almost one quarter (24.3 %) of the total caregiving population. Slightly more than one third of all 2 • transition spring 2011

senior caregivers are over age 75. Women outnumber men in all caregiver population groups. So what care do seniors need and seek when they experience declining health? The answer varies according to who you ask—senior care recipients, informal care providers, or policy makers. It also depends on the characteristics of the senior receiving care— age, marital status, inter-generational family living arrangements, proximity of family support, health status, size of non-family social networks, education, home ownership, and religious affiliation. And, whereas “health status may help... to predict who will receive care, it is not a very good predictor of whether that care will be formal or informal” (Cranswick and Thomas, 2005:. 12). Determinants of Care Interestingly, at least one fifth of seniors of average health also receive care. In general, seniors with poorer health receive more formal and informal care, respectively, but seniors who are satisfied with their family networks tend to receive more informal care. Women who live in their own homes and/or who profess a religious affiliation tend to receive more of both formal and informal care. Overall, seniors tend to receive more formal than informal care as social networks erode over time, and as health requirements become increasingly complex. Social networks and higher education seem to improve access to formal care. GSS data show that 24% of senior care recipients received informal care only (16% of these were over age 85) and 50% received both informal and formal care (30% were over age 85). Twentyfour per cent of seniors in the 65 to 74 age group received formal care only (Statistics Canada, 2007). Whether formal or informal, three types of senior care prevail—instru-

mental care, personal care, and medical care. Instrumental care relates to the tasks of daily living that occur inside and outside the home and include any or all of meal preparation and cleanup, housekeeping, laundry and sewing, house maintenance, shopping for groceries and necessities, transportation, banking and bill paying. Personal care includes bathing, toileting, nail, hair and dental care, and dressing. Medical care includes help with medical treatments or procedures—injections, physiotherapy, bandaging, medications, and so forth—and may also include care management. Portions of each of the three groups are provided through informal care arrangements, while formal care tends to comprise medicalnursing care with some preventive types of services like home maintenance, volunteer visits and respite. Volume and type of eldercare provided by informal caregivers tends to vary along gender lines, but the divisions are not absolute. Generally, women undertake more of the tasks which occur inside the home, and men generally perform more of the tasks which occur outside the home. Although medical tasks are generally provided by formal caregivers, about one quarter of medical care providers are female informal caregivers and more women than men perform the role of care manager—hiring professionals and organizing/managing care schedules. Almost one third (36.5%) of senior female caregivers are over age 75. While family caregivers, particularly spouses, are frequently the de facto primary caregiver, the traditional family care network may also be supplemented by friends and neighbours. Care Commitments When seniors receive informal care, the commitment of caregivers can vary from days, weeks, months, or years, dependThe Vanier Institute of the Family


ing on the characteristics of the recipient. On average, women provide more hours of care per week and, overall, women provide more of the total number of hours of care to seniors in a typical week. While the boomer generation is actively involved in eldercare, on average, seniors over 65 provide more care per week: 15 hours compared to 10.6 hours from baby boomers. Findings from the GSS also indicate that senior women are the ones carrying the heaviest caregiving load. On average, senior women provide 18.3 hours of care per week compared to 13 hours by female boomers between age 45 and 64; senior men provide 11 hours of care per week while male boomers provide 8 hours (Statistics Canada, 2007). Measures of duration (months and years) of time spent providing care show that 13.3% of care lasts under 6 months, 10.7% of care lasts from 6 to 12 months, 15.7% of care lasts between 1 and 2 years, and 60.3% of care lasts over two years (Fast and Keating, 2001). These data demonstrate the severity and intensity of care work and the commitment demonstrated by caregivers. The care commitment of senior caregivers is often underreported because much of it is spousal. High intensity care is often performed with a view to keeping a partner at home and out of institutional care (Cranswick and Dosman, 2008). These same elderly caregivers are less likely to use formal support services because they consider caring to be a ‘natural’ spousal role, leaving themselves vulnerable to burnout and isolation. Additionally, the potential for conflict to arise between informal and formal service providers may lead some senior caregivers to minimize or refuse support from the formal system altogether (O’Connor, 1999). Consequences of Care So what are the consequences for caregivers of doing all this informal

eldercare? Generally, consequences are either economic—employment, income and/or budget related–-or health related. Challenged to balance time and resource demands, caregivers in the labour force may face foregone income and benefits, deferred promotions, and reduced pensions. Out of pocket expenses are also common and may affect all caregivers. Health related consequences speak to the physical, social and emotionalpsychological impact of caregiving (Fast and Keating, 2001). Stress, burnout, and emotional strain are common. Informal caregivers experience “higher rates of depressive and anxiety disorders and use mental health services twice as much” (Lowry, 2002). Friendships and social interests may suffer and caregivers risk becoming intensely isolated. The long-term risk is that the accumulation of stress, exhaustion and isolation becomes so damaging to caregiver health that these individuals join those in receipt of care. Older caregiver spouses who feel overburdened have a higher risk of experiencing negative health outcomes. Interestingly, female caregivers seem to be more resilient when performing more of the care tasks, perhaps because women are generally socialized to provide personal care. With that said, caregivers do not necessarily enjoy the care work; a significant number would like someone else to take over the care burden (O’Connor,1999; Fast and Keating, 2001). The effect of stress on the emotional-psychological health of the caregiver is as important as the physical toll that caregiving can take and may have a greater additional impact on the physical health of senior caregivers. Caring for seniors who suffer from dimentia or who exhibit other behavioural problems or who have a wide range of high care requirements is very difficult. These stressors tend to have

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greater impact on male caregivers. Other risk factors include: length of time in the caring role, residing with the care recipient, not being a spousal caregiver, higher caregiver burden, depression, and fewer social supports. Formal and Informal Care: An Uneasy Partnership Clearly, the phenomenon of providing adequate and sustainable eldercare is complex. It begs questions about the recipient, the provider and the related costs. Assessing these costs requires looking beyond the individuals directly involved and considering the macroeconomic costs related to formal care provision in both the public and private sector. This, in turn, begs questions about cost measurement and, additionally, about how informal care dovetails with formal care within the larger context of the health care system. Little consensus exists around the best means of evaluating the economic costs of informal care provision. What is clear is that assessing informal care costs cannot be done without a look at formal care costs, in particular, as related to home care. Home care, like all other medical services, is shaped by federal and provincial health budgets. Home care services have been impacted by the movement away from chronic care toward home-based acute care services occasioned by shifts in hospital-based care. Under the additional strain of budget caps, formal home care services are feeling the pinch of limited availability. The impacts of the limitations imposed on home care services are passed onto those providing and receiving informal care. With formal home care needs being supplanted by demands for acute home care, additional pressure has been levied on the informal system as a cost-free substitute (White Lobsinger, 2008). As has been discussed, informal care is anything but cost-free. Recent transition spring 2011 • 3


efforts to estimate the costs of doing informal care peg the lower limit of the value of spousal care of seniors with long-term illnesses at approximately $1.88 billion, suggesting that since spousal care is generally underestimated, the costs would most likely be higher (Hayward et al., 2004). Another study suggests that 276,509 full-time employees in formal home care would have been required to replace informal caregivers at an estimated cost ranging between $5 and $6 billion (Fast and Keating, 2001). Since spousal eldercare tends to minimize the use of formal home care, the value of savings to formal home care could also be estimated at approximately $518 million (Hayward et al., 2004). Often lost in the discussion of costs is the interesting fact that seniors express a preference for formal care over informal care, in part, to avoid burdening their informal caregivers and possibly to minimize the risk of elder abuse which may arise from caregiver stress. Equally overlooked is the lack of support services for informal caregivers (Fast et al., 1999, 2004) and the challenges that often arise when the formal and informal systems encounter each other. For example, it is common for the supposed ‘partnership’ between nurses and informal caregiv-

ers to be overshadowed by cost-cutting and efficiency pressures in a system that is increasingly ”budget-centred” and not “patient-centred”. Even with the support of formal home care, informal caregivers are often left with the major burden of the care work. They are often excluded from assessment and planning and/or they receive little practical assistance and advocacy from the care professionals. Ultimately, both professional and informal caregivers can feel powerless, tense and stressed in the face of economic and administrative constraints (Ward-Griffin and McKeever, 2000; Hawranik, 2002). Furthermore, both care recipients and informal caregivers can be frustrated by the impacts on quality of care that arise from frequent home care staff changes, lack of staff knowledge about the care recipient’s health, inadequately trained staff or inconsistent performance by care providers. A Question of Public Policy We know that seniors tend to be healthy and, rather than being care recipients, a significant proportion of seniors are care providers. This bodes well when considering baby boomers as the next cohort of seniors. Nevertheless, seniors do require increasing levels of care with increasing age, and

tend to require both informal and formal sources of care. When baby boomers become seniors, we can estimate that the numbers requiring care will double. Elderly baby boomer caregivers can expect to experience costs and risks similar to those experienced by today’s seniors. This begs the important question: who and what will supplement the eldercare work boomers will be doing? Finding an answer to this question is both complex and critical. It is not enough to rely on the informal care being provided by families and friends. The costs of doing so are too high. Policy decisions that guide and support both formal and informal care provision must not be driven by cost reduction alone. These systems need to buttress and reinforce one another to the benefit of all – care recipient and care provider alike. The health and well-being – physical, emotional and economic – of Canada’s growing senior population depends on it. Terri White Lobsinger, PhD. (Carleton

University 2008) is an independent consultant

who does policy research and project development

and evaluation in the areas of health, social services and education. Terri’s recent PhD. research

examined the contributions of the nonprofit sector in shaping home care public policy.

references Cranswick, Kelly and Donna Dosman. Eldercare: What We Know Today, 2008. 11-008. Cranswick, Kelly and Derrick Thomas. Elder Care and the Complexities of Social Networks, 2005. pt. Summer, 11-008. Fast, Janet E., Deanna L. Williamson and Norah C. Keating. “The Hidden Costs of Informal Elder Care.” Journal of Family and Economic Issues 20, no. 3 (1999): 301-326. Fast, Janet E. and Norah C. Keating. Informal Caregivers in Canada: A Snapshot. Research on Aging: Policies and Practice, 2001. Report to the Health Services Divison of Health Policy and Communications Branch, Health Canada. Fast, Janet, Norah Keating, Pam Otfinowski, and Linda Derksen. “Characteristics of Family/Friend Care Networks of Frail Seniors.” Canadian Journal on Aging 23, no. 1 (2004): 5-19.

4 • transition spring 2011

Hayward, Lynda, Sharon Davies, Roberta Robb, Margaret Denton and Greg Auton. “Publicly Funded and Family-Friend Care in the Case of Long-Term Illness: The Role of the Spouse.” Canadian Journal on Aging Supplement (2004): S39-S48. Hawranik, Pamela. “Always on-Call: The Health of Informal Caregivers for Seniors.” Centres of Excellence for Women’s Health Research Bulletin, Spring 2002 2002, 8-10. Lowry, Jean Ann, “Why Having a National Home Care Program Is a Women’s Issue”, The Canadian Women’s Health Network Magazine (accessed 23/08/05 2005).

Statistics Canada. 2007 General Social Survey: Care Tables, 2009. 89-633-X. Turcotte, Martin and Grant Schellenberg. A Portrait of Seniors in Canada, 2007. 89-519-XIE. Ward-Griffin, Catherine and Patricia McKeever. “Relationships between Nurses and Family Caregivers: Partners in Care?” Advances in Nursing Science 22, no. 3 (2000): 89-103. White Lobsinger, Terri. Advocacy and Nonprofit Charities: Two Cases on Home Care. PhD dissertation. Ottawa: Carleton University, 2008.

O’Connor, Deborah. “”Constructing Community Care”.” In Critical Issues: For Future Social Work with Practice with Aging Persons, 71-96. New York: Columbia University Press, 1999.

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Caring and Kinscripts Susan McDaniel, FRSC

F

amilies in middle and older life are a growing focus of policy interest in Canada. This is largely because of the involvement of families now and in the future in providing care and support for aging relatives and friends. As formal systems of support either shrink or do not keep pace with increased demand for services occasioned by an aging population, the pressure on families to sustain and expand their caregiving roles will only increase. Families, it is now presumed, although not fully acknowledged in any meaningful way, do vital work for society, much of which remains hidden, unacknowledged and gen­dered. The caring work that families do is no exception, and is of particular relevance to mid-life and older families who often find themselves straining to balance the simulta-

neous demands of members of all ages and abilities. Caregiving is receiving long overdue attention as a vital area of research and policy interest, and is one which has preoccupied researchers interested in families, women and aging for decades. Commonly, it is presumed that families - typically meaning women in families - will do, and should do, caregiving to aging or frail relatives, a presumption that has not been much questioned in policy. Many researchers and advocates, however, are rejecting these over-simplifiesd assumptions and challenging policy makers to rethink the tendency to equate a caregiving with kinship and, by extension, the narrow view of women in families as natural and available caregivers. These presumptions can make women feel pressure to

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provide care, even at great costs to themselves and their own future security. Context of Caregiving To best understand the impact and role of caregiving demands on mid-life families and on the women in them, it is instructive to examine the contexts of caregiving. In a national study, Keating et al (1999) found that most Canadians of all ages receive regular help with day-to-day activities from others (meals prepared, clothes washed, houses cleaned, etc). This is part of what living in families entails. We can all think of many different ways that care is provided in response to the changing needs and obligations of members across the lifespan. And yet, as common and essential as are the tasks of caregiving, they are anything but simple. transition spring 2011 • 5


women remained the same from 1996-2006. The sex difference among Hours spent 1996 2001 2006 those who % % % provided no care 0 M 9.5 9.8 10.5 narrowed in this F 9.3 9.7 10.5 period, and the <5 M 1.1 1.2 1.3 numbers providF 1.4 1.6 1.6 ing no care to 5-9 M .2 .3 .4 others increased. The greatest F .5 .6 .6 increase in time 10+ M .2 .2 .3 spent caring for F .4 .4 .5 older persons Overall M 11.0 11.6 12.4 occurred among F 11.6 12.2 13.2 women who spent Source: Statistics Canada. 2004b. 2001 Census of Canada. Ottawa: Statistics Canada. Catalogue number less than 5 hours a 97F0013XCB01004 www.statcan.ca Hours spent providing unpaid care to seniors. Retrieved June 10, 2004; 2006 Census of Canada. Ottawa: Statistics Canada, http://www12.statcan.ca/english/census06/ week caring, and data/topics/RetrieveProductTable.cfm?ALEVEL=3&APATH=7&CATNO=&DETAIL=1&DIM=&DS=99&FL=U&F REE=0&GAL=0&GC=99&GK=NA&GRP=0&IPS=&METH=0&ORDER=1&PID=92108&PTYPE=88971&RL=0&S= women who spent 1&ShowAll=No&StartRow=1&SUB=0&Temporal=2006&Theme=0&VID=0&VNAMEE=Unpaid%20work%20 (20)&VNAMEF=Travail%20non%20rémunéré%20(20), Retrieved April 16, 2008 5-9 hours a week. In recent decades, what is known as the “SandWhen provided to those with wich Generation,” women in the long-term health challenges - most middle of the demands of multiple often for those over age 85, care can be gener­ations, has been spotlighted. The very demanding. Research consistently extent of the demands placed on demonstrates that eldercare is most women in mid‑life by both older and commonly provided by women, younger rel­atives, whether or not they usually wives, daughters or daughtersactually live together in the same in-law, with an increasing proportion household, has been well documented. of men providing eldercare, as well Women in mid‑life are the informal (VIF, 2010: 168). However, men and caregivers for older relatives, and see women informal caregivers to the themselves as taking on the caring, not elderly provide different kinds of care. necessarily out of choice, but because Women tend to provide more they believe that there are few other hours of informal care, and attend to options. Women are often the ones the traditionally feminine tasks of most likely to detect a relative’s need homemaking, personal care and for care as a result of closer-kin ties emotional support. Men predominate borne from expectation and practice. in instrumental tasks such as home Having care provided to you in old age maintenance and repair. by daughters and daughters-in-law Table 1 shows changes over time typically, is simply taken for granted, from 1996 on hours spent by men and assumed to be part of the pact of women in providing unpaid care to family and the kinscripts we create and older relatives or friends. Time spent in inherit. In many ways, eldercare informal care has increased for both policy mimics these assumptions, men and women, but women indeed effectively concretizing existing spent more hours providing eldercare patterns of gendered caregiving. than men. The overall difference in hours spent by men as compared to

Caregiving and Choice Mid‑life women have been found to complain that they may not be best suited to provide caregiving to older relatives, but that there is little or no alternative. Research is also beginning to ask the views of people on their care preferences if they were to become old and frail. Not surprisingly people in mid‑life often do not see family care as their own preferred option. Instead, they express preferences for professional home care or institutional care. Similar attitudes have been found in studies in Europe. Two themes recur. The first is the familiar, “I don’t want to be a burden to my family.” The second is a concern likely to increase in degree and volume as more of the Baby Boom generation enters their older years: that professional care is preferred to amateur (family) care, whenever possible. Yet, the demand persists for family members to care out of limited choice or alternatives, and out of concern and consideration for their relatives and friends, even when family caregiving goes against their own rational self interest. The pay is certainly non-existent, and the hours long, tedious and at times, health-impairing. Caregivers note, of course, that caregiving can and often does offer it’s own intrinsic rewards beyond monetary compensation.

6 • transition spring 2011

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Table 1 Providing Unpaid Care to Seniors by Hours Spent per Week 1996, 2001, 2006 Censuses of Canada Men and Women (100,000)

Caregiving and Public Policy Questions around how to best support/advance family caregiving are informing the many discussions taking place around policy and kitchen tables alike, across the country. Policies, both public and corporate, on caregiving are being given an important second look in these first decades of the 21st century. This review is characterized by a prevailing set of interests: on one hand, caregiving is being examined as essential work, work that is very beneficial to society, even though it is


typically unpaid when provided in families, or lowly paid when provided in the labour market. On the other hand, it is typified as a costly resource that is straining public purse strings as the need for care increases, particularly among people whose care needs are not getting met by the formal system. These are often the people being released from hospitals “quicker and sicker” and needing care at home while recovering. And yet, despite its ‘essential’ nature, there is, in fact, no formal system of home care to adequately fill the gaps, rather a spotty set of often costly, mainly private, options. Thus, caregiving has been thrust on the stage of public policy as one of the fundamental social policy challenges facing western societies at this time. As with daycare, talk of home and chronic care options has been on the public agenda for decades, yet little action has been taken. The closest to action is the provision in some jurisdictions in Canada of respite care for family caregivers in need of a short break. By contrast, home and respite care is routinely supported through public policy in many countries in Europe and elsewhere, as is publicly funded chronic care insurance. The Costs of Caring Discussions about caregiving in Canada have focussed almost completely on the intensification of demand for care with an aging population. Almost no attention is given to the caregiver or potential caregiver, or to the reality that mid-life women may be unavailable or unwilling to drop careers and other life interests to provide care to older relatives. Shortterm attention to the material costs of caregiving is so salient in discussions about programs that it is at times forgotten that caregiving is very costly in human terms, regardless of income

levels. Caregiver “burnout,” the accumulated stress that can occur in situations where one is on call 24/7 facing demanding eldercare, can result. If the primary caregiver is overstressed and becomes ill or disabled, then two people are in need of health care. No one benefits, least of all the taxpayer. Having other options may be a preferable solution, particularly among women who tend , de facto, to do more of the work, experience more strains and have less support in providing eldercare than do men who caregive. The same pattern occurs in childcare where women receive less support and help than men doing the same care for their children – largely a reflection of deeply held assumptions that caring is women’s work anyway, and that it comes naturally and more easily to the ‘fairer sex’. Not surprisingly, women tend to express experiencing a greater amount of stress when it comes to juggling the often competing demands of family, paid and unpaid work (VIF, 2010: 152). Research shows that women are much more likely than men to modify their work patterns - working part-time or shift - to accommodate family responsibilities (VIF, 2010: 84). As such, women are simultaneously more vulnerable both in the labour market and in families, in particular, where the context of long-term family interactions may not be healthy, happy or supportive even prior to caregiving crises. Additionally, the accommodations that so many women make to meet real and perceived caregiving responsibilities directly impacts their own economic security, both in the short and long term. Caring work, to a degree, constructs women’s lives in families as dependent, and in the wider world as secondary workers. Research on “delinquent girls” finds that girls tend to be “policed” to care, coerced into

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Caring work, to a degree, constructs women’s lives in families as dependent, and in the wider world as secondary workers. caring for others to the neglect of themselves, and expected to bear the costs associated with caring (ReitsmaStreet, 1991). Resisting how girls are expected to care is akin to resisting the very definition of femininity in our society. Being labelled unfeminine is being labelled uncaring, selfish, aggressive, competitive with boys rather than supportive of them, and deviant. For delinquent girls, learning to be good (i.e., non‑delinquent) means learning to be caring. This may be understood as a pathway of social “coercion” for women to provide care, thereby lessening the perceived urgency for additional public options for care provision. Caring and Paid Work Work is a central preoccupation of all families, larger today than perhaps ever before, with most women in the paid workforce, regardless of family situations/demands. The widespread assumption that the workplace has become more gender neutral, or certainly less gender unequal has accompanied the view that with age, gender inequities in the labour market tend to decrease or disappear. Realities belie these perceptions. Strong evidence transition spring 2011 • 7


is emerging that the gender division of labour in the workplace is not only not declining in Canada, but in fact, may be being consolidated and even growing (Boyd, Myles & Mulvihill, 1991). History also shows that women tend to take on extra responsibilities for family caring when times get tough in the economy, as well as working harder in the workplace to prevent economic problems from besieging their families (Luxton and Corman, 2001). In this sense, women’s unpaid and paid work has always been highly elastic, and concentrated in low-wage, service occupations such as nursing, teaching, clerical support, etc, where ‘caring’ is a dominant feature. The gendered dimensions of family caring and the implications of women’s caring for pay are only beginning to be examined. Women in caring roles tend to be more time-stressed and less satisfied with time available for leisure than are men (Zukewich, 2003). These tendencies not only add to the traditional gender division of labour at work, but very importantly, reinforce women’s economic dependency in families: the more precarious a woman’s labour market attachment, the greater her need for support (familial, spousal or other) . The shift to part‑time employment as a means to enable women to combine family and work can add to women’s reduced status in both work and family One in four working Canadians provide care or support to someone in

their household, with a full 25% providing time-consuming personal care, with significant direct costs associated with absenteeism from work caused by the demands of caring. The conjunction of the increased demands for care at home, and changes in the workforce roles of women has a number of implications. First, it raises question of gender justice: women are largely perceived as being ‘equal to’ men and society acts as if this is true, while from a socio‑economic and caregiver perspective, this is anything but true. In fact, individual women in mid‑life families may become the buffer between perceptions and economic realities: they pick up the bits and pieces not covered by the paid labour market, as women always have in families. Second, individual women, in the absence of workplace or public policies, are bearing the caregiving load for both young and old. Significant numbers of women report that they would have continued in paid work but left instead because of the demands of caregiving and the lack of suitable options. Relying on unpaid caregivers becomes a primary way to control costs, yet it also serves to preserve women’s presumed “care‑giving nature.” This works doubly to assist the public purse: capitalizing on women’s “volunteer” labour, and at the same time, reducing the eligibility of the older relative for professional care by making family

care the first recourse. In this sense, workplace and community care policies presume traditional concepts of family, of femininity and of limited government involvement in matters that are familial. In summary, there are many complexities in the caregiving conundrum including belief systems about kinscripts or what families are, or should be, or do, the construction of femininity as caring and giving, the lack of options to family care, and the propping up of public policy inaction by women in homes providing care out of lack of any other alternative. A compelling need exists to look at the challenges of caregiving, particularly to elders but also to others in need in society, to see how family care can be better balanced with paid care and with public care insurance, as has been done elsewhere. The issues Canadians face are not unique. We can learn and adapt what other countries have done in balancing family care with other viable strategies and provide all family members with the care options they need and deserve.

Luxton, Meg and June Corman. 2001. Getting By in Hard Times: Gendered Labour at Home and on the Job. Toronto: University of Toronto Press.

Vanier Institute of the Family. 2010. Families Count: Profiling Canada’s Families IV. www.vifamily.ca.

Reitsma-Street, Marge. 1991. “Girls Learn to Care; Girls Policed to Care,” In Carol T. Baines, Patricia M. Evans and Sheila Neysmith (Eds), Women’s Caring: Feminist Perspectives. Toronto: McClelland and Stewart.

Zukewich, Nancy. 2003. “Unpaid Informal Caregiving,” Canadian Social Trends Autumn: 14-18, Statistics Canada Catalogue no. 11-008.

Susan McDaniel holds the Prentice Research

Chair in Global Population & Economy and is Professor of Sociology at the University of Lethbridge. She is the co-author of Close

Relations: An Introduction to the Sociology of

Families, and a longtime member and supporter of the Vanier Institute.

references Boyd, Monica, John Myles, and Mary Ann Mulvihill. 1991. “Gender, Power and Postindustrialism,” Canadian Review of Sociology and Anthropology 28(4): 407-436. Keating, Norah, Janet Fast, Judith Frederick, Kelly Cranswick, and Cathryn Perrier. 1999. Eldercare in Canada: Context, Content and Consequences. Ottawa: Statistics Canada. Catalogue no. 89-570-XPE.

8 • transition spring 2011

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Caring to the End: The meanings of hospice volunteering Katherine Arnup

B

etween July 1, 2008 and June 30, 2009, more than 240,000 people died in Canada. By 2020, with the aging of Canada’s baby boomers, it is estimated that that figure will rise by over 35% to 330,000, creating a potential crisis in the health care system and in our ability to care for our elders. Furthermore, despite the fact that most Canadians indicate that they would prefer to die at home, fully 75% of all deaths occur in hospital or in longterm care facilities. Whether we will be able to meet these challenges and, in the process, be able to die under the conditions we want will, to a great extent, depend on whether we are willing to come to terms with death. This willingness is a reflection, in part, of our collective understanding of how the varied roles and spheres of formal and informal caregiving intersect at this critical juncture of life and death. End-of-life care is a place

where values, feelings, legalities and medical processes collide, where public and private responsibilities and obligations can blur, and where fear, uncertainty, and silence can undermine the best of intentions. To illuminate this increasingly important area of caregiving research and practice, this article will examine the direct experiences of hospice volunteers1 - a group of people who have chosen to face death head on through their work with dying people and their families. Drawing on testimony from in-depth interviews conducted with 15 hospice volunteers (12 women and 3 men), ranging in age from 42 to 80, I hope to show how this type of end-of-life care serves both the volunteers and the dying people, and how it supports and enhances existing family care networks, often providing critical support when families are unable or unwilling to do so.

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Death and dying are essential aspects of living. Volunteers, as the “heart and soul of hospice care,”2 provide support for people as they approach the end of their lives and for their families and friends, as they prepare to bid farewell to the person they love. What is a hospice? The term “hospice” dates back to the Crusades, when monasteries provided refuge not only for the sick and dying, but for weary travellers, women in labour, the poor, orphans, and lepers. Modern hospices trace their origins to Dame Cicely Saunders, pioneering physician and founder of St. Christopher’s House in London, England in 1967. The first hospice programs in Canada opened in 1975 at St. Boniface Hospital in Winnipeg and at Montreal’s Royal Victoria Hospital under Dr. Balfour Mount, who coined the term transition spring 2011 • 9


When a hospice volunteer tells someone about their work, the response is virtually always the same: “You must be a saint!” “palliative care” as an alternative to the word “hospice” which, in Quebec, still carried the stigma as a place of last resort for the poor and derelict.  Today the terms hospice and palliative care are used more or less interchangeably to denote “multi-disciplinary care [focussing on comfort, pain and symptom relief] for people living with terminal illnesses and for their families and caregivers.” (www. virtualhospice.ca/en) Hospice care can be provided within a specialized palliative care unit in a hospital, in a patient’s home through visits by community nurses, palliative care physicians, and hospice volunteers, and in free-standing residential care facilities, such as the Hospice at May Court in Ottawa. Although relatively few in number, free-standing hospices have become an important model for the delivery of services, providing an alternative to home, when medical needs or personal circumstances may make a home death unrealistic, or when a hospital death - the most costly – is undesirable. The Hospice at May Court The Hospice at May Court, a freestanding hospice in Ottawa, Canada, was established in 1987 with a small 10 • transition spring 2011

home visiting program operated from an office in a downtown church. Now located in a beautiful, home-like facility provided by the May Court Club, the hospice has over 300 volunteers, serving as drivers, fundraisers, public speakers, receptionists, and gardeners in addition to direct client care. The hospice runs four programs: family support, day hospice, home support, and the residence, all of which serve people with a life-threatening illness and their families. Three days a week, Day Hospice provides up to fifteen “guests” with a morning snack, happy hour with wine or juice, and a gourmet lunch, as well as activities such as painting, massage, and guided relaxation. In Home Support, patients receive a weekly visit from a volunteer, who might cook a meal, play cards, or sit quietly while the patient sleeps, providing much needed respite for family caregivers. Family support provides counselling services and grief and bereavement support for family members. In the nine-bed residence, approximately 50 volunteers, each working a four hour shift, provide psycho-social support for terminally ill patients and their families. Volunteers assist staff in bathing, repositioning, and changing patients, cook meals, feed patients, and engage in conversation. When a person is actively dying, a volunteer will sit with them until family arrives (or, in the absence of family, until death) to ensure that no one dies alone. Drawing upon the lively, open, and moving conversations I had with volunteers through my research, and upon nearly a decade’s experience as a volunteer myself, I have begun to answer some compelling questions about what brings people to hospice work, and the impact that hospice care has on volunteers, patients, and their family networks.

What motivates people to volunteer in hospice care? When a hospice volunteer tells someone about their work, the response is virtually always the same: “You must be a saint!” This is followed quickly by the assertion that “I could never do what you do.” Given this widespread attitude, the question of what motivates someone to become a hospice volunteer looms large. Eleven of the 15 volunteers involved in my research had experienced the death of someone close to them prior to coming to the hospice. For some, this was life-altering. “Lots of experience with death and dying at a young age,” including the death of a classmate when he was 9 and his sister when he was a teenager, led to Ron’s life-long commitment to hospice/palliative care. Rosy, at 42 the youngest person I interviewed, experienced many deaths in her family, including her father at 49, her mother at 59, and her favourite aunt. The interview demonstrated her deep awareness of death and her enormous commitment to helping people facing illness and the end of life. Mary attributed her involvement to her father, a doctor who took charge of his own dying process. “He helped us see that death wasn’t frightening.” In my own case, caring for my sister when she was dying of cancer at 51 helped me to overcome a paralyzing fear of death. “You’re going to be an expert at this by the time you’re done with me,” she told me, shortly before her death. Little did I imagine that four years later I would find myself volunteering at May Court, a place where I immediately felt that I belonged. Not everyone identified an experience of death as the reason for their initial involvement. Some, like Brenda, had more philosophical reasons. “I didn’t think that as a society we did a very good job with supporting people in the dying…We do a great job of The Vanier Institute of the Family


What challenges have volunteers faced? What supports them in their work? “Don’t you find it depressing?” people often ask, when they hear that someone volunteers in a hospice. That phrase echoed in many of the inter-

views I conducted. There can be no doubt that working in hospice care can be emotionally challenging. In the residence, for example, as many as five of the nine patients may die in a single week, leaving a volunteer with little time to come to terms with their passing before getting on with the tasks at hand. Being with a person facing illness and death can be at once intimate and heart wrenching. People often open up to a volunteer in ways they might not with family members. Most hospice patients are acutely aware that they have no time to waste. Patients who may be reluctant to talk to a family member about their fears may seek a confidante in a volunteer. A husband dying of prostate cancer told one volunteer about his wife of 65 years who had never written a cheque in her life. “How will she manage? I worry so much about her.” Interviewees concurred that being with younger people, particularly a parent of young children, is the hardest part of the job. One recalled watching a 45 year old man arrive at hospice, walking slowly with a cane. “He didn’t want to come in a wheelchair,” his wife explained. Their 9-year old son pulled his father’s suitcase down the long hallway to his room. Nothing can really keep volunteers from feeling the poignancy of these moments. In light of the attention given to “compassion fatigue” and burn-out among health care workers, I asked volunteers what helped them to deal with these emotional challenges. Responses ranged from changing their schedule to find time for reflection after a shift to going for a massage or to a yoga class, or writing in a journal. Others make a point of taking time to acknowledge a person’s passing before starting their next shift. To prevent volunteers from becoming too emotionally involved

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transition spring 2011 • 11

welcoming people into the world but not at the end.” Volunteers who had worked in health care brought not only a familiarity with illness, but a determination to provide an alternative to hospital death. Polly, a retired RN, noted: “I’ve been in hospitals a long time. I know what it’s like to die there. It’s really not nice. I always felt that people had the right to die well.” What keeps people committed to hospice volunteering? I wanted to find out what keeps volunteers coming back week after week and whether their reasons differed from their original motivation. Mary, a 5-year veteran of day hospice, said: “It feels like an extremely privileged place for me to do volunteer work. I’m using the skills I have, expanding my own understanding of myself and the world, and I’m being part of a community.” When I asked her if her reasons had changed, she responded: “I think the fact that it’s even more satisfying than I could ever have imagined.” Wes, a retired Anglican priest, said: “I think the reasons didn’t change. I think they’ve grown deeper in the understanding of what it means to be in a community where people are at the end of their life. I think it’s a privilege that you can share that part of a person’s life.” Several volunteers described the hospice as a privileged place to be. Brenda considers it “a privilege to be able to … be with somebody at the end of their life,” the most vulnerable and intimate time of their life. Sylvia, a long-serving home support volunteer, echoed these words: “I really feel that it’s a privilege that people have accepted you. They haven’t necessarily wanted to but they have. So I’m really privileged that they’ll let me come in and share that much.”

All of the volunteers commented on how meaningful the work is for them. Rosy explained: “If I were to die tonight, I would know I have helped somebody who didn’t have that help… It really does give me a sense of peace.” Brenda, who came to hospice largely for philosophical reasons said: “The commitment to the concept is still very strong. But the reason that I stay is because I have made a difference in someone’s life.” Volunteers in the residence talked about how grateful patients and family members are for the help they provide. Family members have often been providing care almost single-handedly in the home before their loved one is admitted to the residence. Now they are able to simply be family members, as staff and volunteers assume the physical burden of care. “You guys are all so amazing,” family members often comment. When a volunteer leaves at the end of their shift, they know that it mattered that they showed up that day. Being present with a person as they approach death is considered an honour. Janice and Alex, hospice shift buddies in the early days of the residence, each described a moment that had an almost sacred quality. Alex: “We had a woman who was dying of ovarian cancer. I walked in and Janice was in her room rubbing her extended belly. And I was so moved by that. This woman was a Bible person, and after a couple of weeks, I was allowed to read. On the Monday before she died … she called both of us into her room and she said, ‘Janice, you can massage my feet, and Alex, you can read what I tell you. And both of you are to not say a word.’”


with patients, hospice policies around boundaries are strictly enforced. Volunteers work only four hours per week and cannot drop in on patients or give out their home phone number, a request that is made more often than one might imagine. In home support, volunteers work a maximum of six months with a patient before being transferred to another case. While some respondents told me they found this policy “cruel,” most felt it was essential for maintaining their emotional well-being. One thing rang out loud and clear in the interviews. If volunteers knew that their work had made a difference in someone’s life, they were able to deal with sadness and loss. But if they felt there was little for them to do, or that they were spending all their time doing “busy work,” and very little time at the bed-side, then they began to question the value of their service. As the demand for volunteers increases in the years to come, hospice administrators and staff will need to ensure that volunteers feel they are truly part of the inter-disciplinary team.

death on a weekly basis. The people I interviewed credited their hospice work for making them more open, centred, and appreciative of each day. I wondered whether this had in turn affected the people in their lives. While friends and family might not be ready to sign up for hospice duty themselves, being close to someone who works in hospice care inevitably brings the subject of death to the fore, even if the specifics of the work are never broached. Evelyn, a 12-year day hospice veteran, explained: “Over the years, I’ve seen a huge difference in my husband who hated hospitals and was scared of anything medical. And he was just very, very good with his Mum in her last time on earth, and with his Aunt.” As Mary explained: “We’re changed. People see us differently. They approach us when they are facing death, or the death of someone they love. People know that they can talk to us about death. They know that … we’re by and large not afraid.”

How does hospice work change volunteers and, in turn, influence the people in their lives? “I don’t mind dying,” Woody Allen once quipped. “I just don’t want to be there when it happens.” This remark reflects the attitudes of our death-denying culture. Hospice volunteers, in contrast, choose to face illness and

In the End Much like family caregivers who commit daily to providing care and support to ailing, frail or dying members of a kin-based network, hospice volunteers are an indispensable component of the palliative care team, providing, in the words of one researcher, “a unique contribution to individuals approaching the end of their lives… The presence of volunteers restores the

endnotes

references

1. All examples cited in this discussion are drawn from a case study of The Hospice at May Court, a free-standing hospice in Ottawa, Canada/

Canadian Virtual Hospice website: http://www.virtualhospice.ca/en_US/ Main+Site+Navigation/Home.aspx

2. See, for example, “Volunteers are the heart and soul of Snowline Hospice”, Mountain Democrat, November 26, 2010.

Manal Guirguis-Younger and Soti Grafanaki, “Narrative Accounts of Volunteers in Palliative Care Settings. American Journal of Hospice and Palliative Medicine 25, 1 (February/March 2008), 16.

12 • transition spring 2011

human relationship to palliative care, and this is essential to patients’ comfort, peace, and reconciliation with this difficult stage in life.” (Guirguis-Younger and Grafanaki, 2008). These volunteers provide an equally critical buttress to the more informal systems of care that typify family caregiving. Moreover, in the process of end-of-life caring, volunteers themselves are transformed. More open, less judgemental, they have learned the importance of living in the present moment, by sitting at the bedside of people who are dying. As one volunteer explained, “We have been given a gift. We are allowed to be with someone in that intimate time and space.” In turn, volunteers share this gift with the people in their lives. Through their calm acceptance of death and their willingness to accompany people who are dying, hospice volunteers open up a space for discussions about death and dying, and about how we want to face the end of our own lives. Katherine Arnup is a professor of Canadian

Studies at Carleton University and a hospice

volunteer with nearly a decade of service. She

served as a family care-giver for her sister and

her parents when they were dying. The author of Education for Motherhood: Advice for

Mothers in Twentieth-Century Canada and of more than two dozen articles on the changing Canadian family, she is currently writing a book about death and dying.

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The Current State of Canadian Family Finances 2010 Report

After the Nuclear Age? Some Contemporary Developments in Families and Family Law in Canada

Contemporary Family Trends Series

February, 2011

Lois Harder, University of Alberta

The 12th annual report on Canadian family finances examines incomes, spending, savings, debt and net worth across family and household types. It takes a closer look at households in the middle of the income spectrum, who they are and how they have been faring over the past two decades.

In a review of recent changes to family law, this paper examines the complexity of ‘family life’ in Canada. Drawing on compelling new trends in legal theory and practice, Professor Harder challenges us to consider the extent to which the persistence of the nuclear family as a normative ideal is a reflection of actual lived experience. Her analysis encourages broad thinking about how and why familial relationships are defined, and the policy-making that supports how Canadians actually organize their family lives.

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Partnership matters

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Residential Long-Term Care for Canada’s Seniors: Nonprofit, For-Profit or Does It Matter?

April 26-29, 2011, Montreal, PQ

Online friends almost as valuable as real family

Margaret J. McGregor and Lisa A. Ronald, Institute for Research on Public Policy (IRPP) Findings from this paper show that the type of ownership of residential long-term care facilities for frail seniors is a determinant of the quality of care provided. The study reviews the US and Canadian research on the ownership and quality of services in these facilities, and concludes that for-profit facilities are less likely to provide quality care than nonprofit or public facilities. The authors make several recommendations related to funding and delivery to ensure quality of services. For a full copy of the report, go to: www.irpp.org/

Canadian Coalition on the Rights of Children (CCRC) Canada submitted its official Third and Fourth Report on implementation of the Convention on the Rights of Children on November 20, 2009. In response, the CCRC is preparing national, community-based reports on various aspects of children’s rights, in cooperation with other groups across the country. A series of Working Documents have been created for two purposes: 1. To inform discussion about children’s rights; 2. As a vehicle to solicit feedback, knowledge and ideas for further reporting. When all of the thematic reports are completed, they will be consolidated for submission to the UN Committee on the Rights of the Child, for use in the official review of Canada’s implementation of the Convention. To participate go to: www.rightsofchildren.ca/monitoring

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According to a recent study published in the Journal of Youth Studies (2010), young people identify with their online community almost as much as their own family. The study asked if and how online groups are standing in for traditional peer groups, thought to be weakening in some developed countries. The authors concluded that games, social networking sites and other online hangouts should be seen as crucial contexts for today’s youths’ identification and socialisation experiences. For a copy: http://www.hiit.fi/~vlehdonv/documents/ Lehdonvirta-2010-youth-onlineidentification.pdf

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April 27-28, 2011, Toronto, ON 2nd Annual Marketing to Digital Moms Engaging the Mega Influencers of Today Attend this conference to find out how to create successful digital campaigns that add value to moms, build brand loyalty and enable social sharing.

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May 25-26, 2011, Vancouver, BC 20th John K. Friesen Conference - Growing Old in a Changing Climate: Exploring the Interface Between Population Aging and Global Warming

Canadians and Their Money: Building a brighter financial future Task Force on Financial Literacy

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On February 9, 2011, Canada’s Task Force on Financial Literacy released a recommended plan of action to the federal Minister of Finance, outlining a national strategy to strengthen Canadians’ financial literacy. The report highlights five priority areas: shared responsibility, leadership and collaboration, lifelong learning, delivery and promotion and accountability. The 30 comprehensive recommendations are tailored to meet the diverse needs of Canadians by enhancing formal education, integrating with federal government programs, creating a single-source website, delivering clear communications and building awareness. For a copy of the report: www.financialliteracyincanada.com

VIOLENCE AGAINST WOMEN Complex Realities and New Issues in a Changing World An international symposium that will bring together researchers, practitioners, political decision makers, and students from around the world to share knowledge and practices and debate current issues in the field.

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June 5-8, 2011, Toronto, ON FICCDAT - Festival of International Conferences on Caregiving, Disability, Aging and Technology will bring together six important and different conferences all focused on enhancing the lives of seniors, persons with disabilities and their family caregivers.

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June 23 to 25, 2011, Halifax, NS 12th Canadian Collaborative Mental Health Care Conference Charting a New Course to Better Care: Stronger Links between Consumers, Families and Health Care Providers.

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Families Caring