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who

c a re s?

When seniors take care of seniors

fa m i l y t i e s Discover the context of caregiving

to g e t h e r to t h e e n d The meaning of hospice volunteering

transition FA M I LY L I F E a s i t U N F O L D S

the that

w i n te r e d i t i o n

FAMILY CARES

t ra n s i t i o n

1

2011 WINTER Edition Vol. 41 no. 1


07.06.2011

Conférence annuelle 2011 de l’Association canadienne de santé publique

La santé publique au Canada : des partenariats novateurs en action Palais des congrès de Montréal  Montréal (Québec) du 19 au 22 juin 2011

Canadian Public Health Association 2011 Conference

Public Health in Canada: Innovative Partnerships for Action

Th e Va n i e r I n s t i t u te Fo r t h e Fa m i l y

Palais des congrès de Montréal  Montreal, Quebec  June 19-22, 2011

t ra n s i t i o n

2

PROGRAMME FINAL FINAL PROGRAM


calendar April 26-29, 2011. Montreal, PQ

FRP Canada National Conference: Early Learning, and a whole lot more! > www.frp.ca

transition

April 27-28, 2011. Toronto, ON

winter 2011

FA M I LY L I F E a s i t U N F O L D S

2nd Annual Marketing to Digital Moms Engaging the Mega Influencers of Today: Find out how to create successful digital campaigns that add value to moms. Build brand loyalty and enable social sharing. > www.opendialogueinc.com

May 25-26, 2011.

in this issue…

Vancouver, BC

7 8 14

FEATURE ARTICLE: who cares?. . . . . . . . . . . . . . . . . . Terry Lobsinger

family ties . . . . . . . . . . . . . . . . . . Susan McDaniel, FRSC

supporting families. . . . . . . . Katherine Arnup

20th John K. Friesen Conference - Growing Old in a Changing Climate: Exploring the Interface between population aging and global warming. > www.sfu.ca/fc2011

May 29 – June 1, 2011. Montréal, PQ

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. > www.conferenceviolence.com

June 5-8, 2011. Toronto, ON

also...

We think you should know . . . . . . . . . . . . . . . . . . . . . 10 Stories from the fields. . . . . . . . . . . . . . . . . . . . . . . . . 14 Young people’s perspectives. . . . . . . . . . . . . . . . . . . . 17 Partnership matters. . . . . . . . . . . . . . . . . . . . . . . . . . . 12 37... and counting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

FICCDAT - Festival of International Conferences on Caregiving, Disability, Aging and Technology: Six important and different conferences all focused on enhancing the lives of seniors, personswith disabilities and their family caregivers. > www.ficcdat.ca

June 23 to 25, 2011. Halifax, NS

12 Canadian Collaborative Mental Health Care Conference - Charting a New Course to Better Care: Stronger Links between Consumers, Families and Health Care Providers. th

> www.shared-care.ca

July 10-15, 2011. Victoria, BC

XVI Biennial International Foster Care Organization Conference > www.ifco2011.com


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2011 WINTER Edition Vol. 41 no. 1


editor’s note transition

winter 2011

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 yourold Transition address label, with your new address, to Vanier Institute of the Family. See page 14 for contact information. 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, However, 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 K2G 6B1 Email: llegault@vifamily.ca

Here 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

“It is difficult to think of a family dynamic that doesn’t involve caring in some shape or form.” 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.

J e n n i T i p p e r, E d i t o r


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Th e Va n i e r I n s t i t u te Fo r t h e Fa m i l y


F E AT U R E A RT I C L E

WHO cares

as pressure from a growing aging population mounts, often the only caretakers left are other seniors

by Terry Lobsinger

It 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.

Th e Va n i e r I n s t i t u te Fo r t h e Fa m i l y

formal or informal care

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8

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 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. 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 w caregiving population. Slightly more than one third of all 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—instrumental 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 medical nursing care with some preventive types of services like home maintenance, volunteer visits and respite.


“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.”

When seniors receive informal care, the commitment of caregivers can vary from days, weeks, months, or years, depending 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. 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

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.

WHO

18.3

cares

hours per week

provided by senior WOMEN

11

hours per week

provided by senior MEN

Health related consequences speak to the physical, social and emotional psychological impact of caregiving (Fast and Keating, 2001). Stress, burnout, and emotional strain are common. Informal caregivers (Statistics Canada, 2007).

13

hours per week

provided by FEMALE boomers between age 45 and 64

8

hours per week

provided by MALE boomers between age 45 and 64

w i n te r e d i t i o n

care commitments

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).

9 t ra n s i t i o n

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.


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). o

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. 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). 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. Statistics Canada. 2007 General Social Survey: Care Tables, 2009. 89-633-X. Turcotte, Martin and Grant Schellenberg. A Portrait of Seniors in Canada, 2007. 89519-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.

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


is nostrum veniam, qu a im in m ad ris susullam corpo em n o ti ta ci exer uid ex ea Canada la , nisi ut aliq m e r sa t o ri n o b o la tem cipit ur? Quis au passage, M m u i consequat s d o m Ip uam m ip iq co m al d dnam Lore sectetur a n o re reprehen c iu t, m e eu m l a ve im ad dolor sit ore quaerat voluptatem. Utoen b la t u t m exerit n ru u st id id c , quis n in " m r ia o n p ve a m d te minim uam d do eiusmo m, quis qui in ea voluptate velit esser,qvel illum e ia s n t, e li v e g im in in u m isic e consequat . Ut enim ad a u ihil molestia q x n li e a uo voluptas a q ip t n u ia g q g a ali t eum fu u i m is re n lo o d is et dolore m i r u q labo r?" on ullamco ti a it c nulla pariatu r e x e d u tr s no mus et iusto eos et accusa im ro en t. ve a o t u em "A q N e us qui blan plicabo. o cons simos ducim is n t dicta sunt ex ig si e d s en ta io ta el ea commod d p d o tum ia volu iste tium volupta luptatem qu nde omnis u en vo ia s es u ti m q ra ia sa p d ic s ip se ii isp , al dit git "Sed ut per re magnam accusant odit aut fu uia gnise et dolo voluptatem pernatur au q q t as d si at r i nam se it , ro ag it g er m m s fu natu dolore it aut m, tota ui atur aut od e laudantiu uaerat ve et q n u q s q er p eo m am entis u re q es re lo ra o lo ni do ab illo tium d ditiis p uuntur mag e ipsa quae us qui blan q u m q se t. ci n n ea u u , d co ci m iq es ia al n i to rem aper ptatem sequ asi architec iti atquitate ritatis et qu ratione volu ui doatum delen q ve o u t, re es to n am . ve u o in quisq milique plicab eque porro esciprovident, si n dicta sunt ex N n i e o u n ta q vi se e m ia ta bea qluptate tatem qu ui. o ipsam volup lorem ipsum est, qui sunt ulpa q an d u Nemo enim la o quisquam e rr u o q p m e u re lo eq o , N unt. amet asm d ia dolor sit ora voluptas sit modi temp m ipsum qu s re u ia ei lo o d am d u am velit, se qu tium, totq olore magn ur, adipisci d et et ct re se o n o b co p la di tem ra im incidunt ut am eius mo u tatem. Ut en q p m lu u n vo t n o ra n ae magnam aliquam qu eriam, ore et dolore b ap la m t u re t n m u m d inci venia . Ut enim ad minima voluptatem tore t n ra ve ae in u q lo il aliquam quae ab e vieaque ipsa itecto beata ch ar i as u q veritatis et

m Lorem ipsu

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

w i n te r e d i t i o n

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

Canadians and Their Money: Building a brighter financial future Task Force on Financial Literacy On February 9, 2011, Canada’s Task Force on

11 t ra n s i t i o n

Online friends almost as valuable as real family According to a recent study


family

TIES Th e Va n i e r I n s t i t u te Fo r t h e Fa m i l y

Families in middle and older life are a grow-

t ra n s i t i o n

12

ing 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 simultaneous 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-simplified assumptions and challenging policy makers to rethink the tendency to equate a caregiving with kinship and, by exten-

Pressure on families to sustain and expand their traditional caregiving roles to aging family members is increasing and at what cost? by Susan McDaniel, FRSC

sion, the narrow view of women in families as natural and available caregivers. These presumptions can make women feel pressure to 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 When provided to those with long-term health challenges - most often for those over age 85, care can be very demanding. Research consistently demonstrates that eldercare is most commonly provided by women, usually wives, daughters or daughters in- law, with an increasing proportion of men providing eldercare, as well (VIF, 2010:


Table 1 shows changes over time from 1996 on hours spent by men and women in providing unpaid care to older relatives or friends. Time spent in informal care has increased for both men and women, but women indeed spent more hours providing eldercare than men. The overall difference in hours spent by men as compared to women remained the same from 1996-2006. The sex difference among those who provided no care narrowed in this period, and the numbers providing no care to others increased.

Table 1 Providing unpaid care to seniors by hours spent per week (censuses of canada men and women)

Hours spent 0 <5 5-9 10+

Overall

1996

2001

2006

%

%

%

M

9.5

9.8

10.5

F

9.3

9.7

10.5

M

1.1

1.2

1.3

F

1.4

1.6

1.6

M

.2

.3

.4

F

.5

.6

.6

M

.2

.2

.3

F

4

.4

.5

M

11.0

11.6

12.4

F

11.6

12.2

13.2

Source: Statistics Canada. 2004b. 2001 Census of Canada. Ottawa: Statistics Canada. Catalogue number 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

The greatest increase in time spent caring for older persons occurred among women who spent less than 5 hours a week caring, and women who spent 5-9 hours a week. In recent decades, what is known as the “Sandwich Generation,” women in the middle of the demands of multiple generations, has been spotlighted. The extent of the demands placed on women in mid‑life by both older and younger relatives, whether or not they actually live together in the same household, has been well documented. Women in mid‑life are the informal caregivers for older relatives, and see themselves as taking on the caring, not necessarily out of choice, but because they believe that there are few other options. Women are often the ones

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.

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.

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Women tend to provide more hours of informal care, and attend to the traditionally feminine tasks of homemaking, personal care and emotional support. Men predominate in instrumental tasks such as home maintenance and repair.

most likely to detect a relative’s need for care as a result of closer-kin ties borne from expectation and practice. Having care provided to you in old age by daughters and daughters-in-law typically, is simply taken for granted, assumed to be part of the pact of family and the kinscripts we create and inherit. In many ways, eldercare policy mimics these assumptions, effectively concretizing existing patterns of gendered caregiving.

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168). However, men and women informal caregivers to the elderly provide different kinds of care.


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. Short-term attention to the material costs of care-

giving 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. 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 caring for others to the neglect of themselves, and expected to bear the costs associated with caring (Reitsma- Street, 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. o

Book Review:

Th e Va n i e r I n s t i t u te Fo r t h e Fa m i l y

The By Families, For Families Guide to Assisted Living.

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Assisted living doesn’t have to be just the next place for Mom and Dad.  It can be the foundation for many years of fantastic memories.  Assisted living author and expert Ryan Malone shares with you the secrets only revealed by someone who has made assisted living a positive and rewarding experience for his mother and family. A powerful and easy-to-apply workbook is included and serves as your companion and notebook during this transition.  The workbook offers step-by-step exercises to help you make the best decisions quickly.  Included with the workbook is a sample advanced healthcare directive and a typical assisted living residency agreement – both critical in negotiating your loved one’s first rental agreement.

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

Reitsma-Street, Marge. 1991. “Girls Learn to Care; Girls Policed to Care,” In

28(4): 407-436.

Carol T. Baines, Patricia M. Evans and Sheila Neysmith (Eds), Women’s Caring:

Keating, Norah, Janet Fast, Judith Frederick, Kelly Cranswick, and Cathryn Perrier. 1999. Eldercare in Canada: Context, Content and Consequences. Ottawa: Statistics Canada. Catalogue no. 89570-XPE.

Feminist Perspectives. Toronto: McClelland and Stewart. Vanier Institute of the Family. 2010. Families Count: Profiling Canada’s Families IV. www.vifamily.ca.

Luxton, Meg and June Corman. 2001. Getting By in Hard Times: Gendered

Zukewich, Nancy. 2003. “Unpaid Informal Caregiving,” Canadian Social

Labour at Home and on the Job. Toronto: University of Toronto Press.

Trends Autumn: 14-18, Statistics Canada Catalogue no. 11-008.


we think

you should

know...

young people's

perspective

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the % of men and women (respectively) who participate in daily housework

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the proportion of Canadian workers aged 15+ unsatisfied with their work/family balance

the % of teens who say they cut back on sleep to get things done

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caring to the end: the meanings of

hospice volunteering

by Katherine Arnup

Between 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 long-term 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

Th e Va n i e r I n s t i t u te Fo r t h e Fa m i l y

willing to come to terms with death.

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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 endof-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. 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 “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.

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/

2

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


“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 interviews 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 the end Much like family caregivers who commit daily to providing care and support to ailing, frail or dying members of a kinbased network, hospice volun-

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. o

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.

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

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What supports them in their work?

teers 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 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).

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what challenges have volunteers faced?


37...and counting

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Th e Va n i e r I n s t i t u t e Fo r t h e Fa m i l y

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