Time and Consequences of Informal Care to Frail Seniors

Time and Consequences of Informal Care to Frail Seniors Norah Keating, PhD, 1 janet Fast, PhD, 2 Professor, 2 Associate Professor, 1 2 Department of Human Ecology, University of Alberta Abstract: an aging population and cuts to health care budgets have resulted in increased pressures on formal and informal (family and friend) caregivers to provide more care at less cost. In this article, we focus on the time and costs to women who provide informal care to Canada's frail seniors. Data are presented from a national Statistics Canada survey on informal care for Canadians with long-term health problems. Findings are that 1.3 million women of all ages provide an average of five hours of informal caregiving per week. This care involves a wide range of tasks. Women caregivers experienced negative consequences to their social, psychological, economic and physical well-being. While only about one-quarter of women caregivers reported that their responsibilities had affected their health, their reported experiences of stress, sleep disturbance, social isolation and economic sacrifice may well put their future health and well-being at risk. Health care professionals are strategically placed to monitor the health of these caregiving partners and ultimately to help them maintain their caring capacity. Resume : le vieillissement de Ia population et les compressions budgetaires des soins de sante creent des pressions accrues sur les aidants naturels (famille et amis) aussi bien que sur les professionnels de Ia sante qui doivent tous fournir plus de soins a des coots inferieurs. Cet article examine le temps que les femmes consacrent aux soins non constitues des personnes agees, et a quel prix. II presente les donnees d'un sondage national de Statistique Canada portant sur les soins non constitues fournis aux Canadiens affectes par des problemes de sante a long terme. II a ete etabli qu'un million trois cent mille femmes de tous ages fournissent des soins non constitues pendant cinq heures par semaine, en moyenne. Ces soins comprennent une grande variete de taches. La vie de ces femmes s'en trouve affectee d'une maniere facheuse du point de vue de leur bien-etre social, psychologique, economique, et physique. Bien que seulement environ le quart de ces femmes aient signale que leurs responsabilites d'aidant nature! avaient affecte leur sante, il est probable que le stress, les pertes de sommeil,!'isolation sociale et les sacrifices sur le plan economique que ces femmes doivent endurer ont des repercussions sur leur sante et leur bienetre a long terme. Les professionnels de Ia sante sont bien places pour surveiller Ia sante de ces aidants naturels et les aider a maintenir leur capacite de fournir ces soins. J Soc Obstet Gynaecol Can 2000;22(2): I 36-40 INTRODUCTION KeyWords Women, informal caregiving, time, consequences. Received on August 24th, 1997. Revised and accepted on September 13th, 1999. Increasing concern about how to care for frail seniors has marked the end of the 20th century in Canada. Concern arises from two sources: the aging population and the funding of health care. Demographic changes in the Canadian population have resulted in increasing numbers of seniors, now a larger proportion of the Canadian population than ever before. Concurrent reductions in health care funding have meant that care must be provided with fewer economic resources. Health care professionals have become familiar with the resultant pressure to provide more care to increasing numbers of older people with chronic health care needs. The pressure to do more with less has also affected the informal health care sector-family members and friends who provide care to frail seniors. Increasingly, responsibility for meeting the needs of frail seniors has been transferred to these caregivers. Their involvement is seen as attractive, as they are largely unpaid and their labour is viewed as having little cost. 1 Current

Canadian health care policy includes a strong belief that seniors are cared for best by those who know them best. Thus, just as health care professionals are expected to do more, so are the friends or relatives of elderly Canadians. This article will provide information on the magnitude of the contributions Canadian female informal caregivers make to closing gaps in the needs of seniors with long-term health problems. Women are the predominant caregivers of older, dependent family members. 2 3 We show that there are women of all ages, who perform a wide variety of caregiving tasks, and who suffer costs to their psychological well-being, to their social contacts, to their employment and to their health. Data are drawn from a national survey on caregiving, conducted by Statistics Canada. The survey of 12,000 Canadians over age 15 was conducted in 1996. In this article, we report on help given by 1,366 respondents to people over age 65 with long-term health problems or physicallimitations.4 THE SANDWICH GENERATION OR THE CAREGIVING CAREER? One of the assumptions in the literature is that informal caregiving to frail seniors is intense but probably time limited. Caregiving is seen primarily as an issue for middle-aged women looking afrer parents. It is this group that is seen as the sandwich generation, with the concurrent demands of marriage, parenthood, employment and elder care. 5 To a certain extent, this assumption was borne out by our findings. The average age of women caregivers in the sample was 46. Most were married (66) and employed (52), though only a minority (25) had young children at home. Yet such averages mask the heterogeneity of these caregivers in both age and relationship to the person receiving care. Some women began caregiving early in their lives. Thirteen percent children caring for parents. However, in this age group a substantial minority was caring for spouses and for friends. The majority of women caregivers over 75 were caring for friends, though many were caregivers to their husbands. Figure 1 depicts this "caring career". Young women care for relatives who may be two generations older than themselves while the middle-aged care for parents. In contrast, while some women age 60 to 7 4 are still caring for parents, some are also caring for same-generation friends and kin. The oldest women care for their spouses and for elderly friends and neighbours. This does not take into account multiple caregiving relationships; more than 70 percent cared for more than one person. CAREGIVING TIME AND TASKS Clearly, women of all ages were involved in caregiving. As Figure 2 illustrates, they also were involved in a wide range of tasks, suggesting intense involvement in meeting the needs of the seniors. Almost sixty percent were constantly vigilant, monitoring the senior's condition and circumstances for unmet needs. High proportions also faced the daily demands of such tasks as meal preparation, shopping, transportation and housekeeping that are so important in maintaining a senior's independence. Fully one-third were doing especially taxing personal tasks, including bathing, dressing, feeding, medicating and helping the senior to use the toilet. Many also provided emotional support, which requires regular interaction and is viewed by some as particularly critical to the well-being of the senior. CAREGIVING CONSEQUENCES Assuming responsibility for caring for one or more frail seniors is not without consequences. Volunteers have reported such benefits as satisfaction, an increased understanding of themselves and were between 15 and 29 years old. Caregivers FIGURE I WOMEN'S CAREGIVING CAREER over the age of sixty comprised 18 percent of 1 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -----i the total. 100 Figure 1 provides a picture of the caregiving responsibilities of women of different ages. The figure is intended to illustrate two things: 80 that women are likely to have elder care responsibilities throughout life; and that they 60 are likely to be caring for seniors with whom they have different relationships at different stages. 40 We tend not to think of young people as having caregiving responsibilities; yet there 20 was a group of women aged 15 to 29 who were caring for extended fumily members, for example grandparents. In contrast, women 0 75+ 15-29 30-44 45-59 60-74 aged 30 to 44 and 45 to 59 were more often caring for their parents or parents-in-law. I] spouse O adult child. sibling.ext. family.friend Many of those aged 60 to 74 were also adult JOURNAL SOGC FEBRUARY 2000

the process, a greater sense of accomplishment and self-ronfidence, closer relationships with those for whom they are caring and increased tolerance for and understanding of others. 6 7 However, researchers have focused more often on the "costs" of caregiving. Their work shows that caregiving interferes with personal, family and social time, 8-10 and it has been shown to have a negative affect on the caregiver's relationships with others. 11 Perhaps the most pervasive findings relate to the psychological consequences which include depression, guilt and the burden of responsibility. 12-14 Such economic consequences as lower productivity, absenteeism, tardiness and reduced or foregone employment also have been demonstrated.7 15 16 Not surprisingly, these social, emotional and economic hardships contribute to stress, sleep deprivation and, ultimately, health problems. 10,17, 18 Data from the 1996 GSS supported the prior literature, showing that many Canadian female caregivers experienced the ronsequences described above. Figure 3 shows the proportion of women experiencing a set of social, psychological, employment and health consequences. More than 40 percent reported a lack of personal time and changes in their social activities. Notable among the psychological consequences is the finding that more than 60 percent of the women felt guilty about not doing more for the seniors. More than one-quarter said they sometimes felt angry around the senior for whom they cared. Between 17 and 36 percent of employed caregivers reported accommodating their employment schedules to their caregiving demands in some way. While a surprisingly small 18 percent felt burdened by their FIGURE 2 responsibilities, almost 60 percent were stressed by it all, and onethird reported disruptions in their sleep. It is perhaps surprising, then, that only 28 percent reported an affect on their health. The consequences of giving care are not all negative. Among these same women, the vast majority (more than 80) indicated that their efforts were rewarded in that they could reciprocate their own good fortune and!or enjoy a better relationship with those for whom they were caring. Perhaps these intrinsic rewards ronttibute to keeping women involved, despite the toll it takes on many. WHICH CAREGIVERS ARE MOST AT RISK? Multiple regression analyses4 were run to identify the characteristics that placed caregivers at greatest risk of experiencing negative consequences. The best predictors included relationship, labour force status, the number of people cared for and geographic proximity to the elder. Daughters caring for parents reported experiencing the most economic, social and psychological effects. Competing demands, including having young children at home and being employed full time, generally increased the severity of the consequences. There was one exception; women with young children at home felt less guilty about the amount of care they provided than their childless counterparts. Perhaps they felt that their parental responsibilities excused them to some extent from doing more for seniors. Distance added to the hardship in unexpected ways. Those living at a moderate distance, less than a half day's travel, from the senior for whom they were caring were most likely to report that WHAT CARE TASKS DO WOMEN DO? '... -?a ':' 1;:.?a -o 'b... (I) - '0 a<> 9]... 9.,...

their responsibilities affected their social lives, their psychological well-being and their employment. These caregivers probably lived dose enough to be expected to help but far enough away to find the commute stressful and time-consuming. It also is important to note that the more time women spent caring for the senior, the more likely they were to experience social, psychological, economic and health consequences. Those spending seven hours per week or more caring for a senior in addition to their other responsibilities seemed to be especially vulnerable. This applied to an important minority (17) of women, suggesting that some caregivers continue to try to do it all, but at great personal cost. SUMMARY, IMPLICATIONS AND CONCLUSIONS While the majority of women elder care providers were daughters caring for parents, there was considerably more variation in the ages of caregivers and their relationships to the care recipient than is often assumed. In fact, our evidence supports the argument that "caregiving careers" are typical for women. Evidence also suggests that informal caregivers are highly involved in meeting the needs of their senior &iends and relatives. In 1996, almost 1.3 million Canadian women cared for one or more seniors, and spent an average of five hours per week performing a wide variety of tasks for each. At an aggregate level, this approximates the work of 165,000 full-time employees. Women's caregiving responsibilities have been shown to carry a high price, decreasing the time they have for themselves, their families and their paid work. Simultaneous responsibilities for child care and paid work did not reduce their involvement in caregiving, but did increase the risk that the elder care would harm their social, psychological, economic and physical well-being. Similarly, those who spent more time commuting and/ or caregiving were more vulnerable. While only about one-quarter of women caregivers reported that their responsibilities had affected their current health, there are worrisome indicators, including stress, sleep disturbance, social isolation and economic sacrifice, that may well put their future health and well-being at risk. There is evidence that when caregiving limits personal free time, stress levels increase and satisfaction with life decreases. 19 Similarly, high levels of stress and sleep disturbance are known to be associated with many health problems.10 The relationship between economic well-being and health has also been well established. I9 Our findings suggest that exhorting women to provide more care may be counter-productive in several ways. The important contributions women are already making to meet seniors' needs, and the many negative consequences already experienced by women caregivers, suggest that there is little excess caregiving capacity to be tapped. At the same time, the positive feelings of reciprocity and the feelings of guilt over the amount and quality of care being provided may keep women from putting their own health and well-being first. Furthermore, the long-term economic consequences of foregoing current employment and training opportunities put women caregivers at risk for poverty and its associated health problems, both now and in their own retirement. Informal caregivers to frail seniors are experiencing increasing demands on their time and other resources. For some, the length FIGURE 3 CONSEQUENCES OF CAREGIVING b "{; -:f C. 0. a;, :;::; <e.- '::). "{; C. '?. <:.. o- "'

FIGURE 4 POSITIVE CONSEQUENCES OF CAREGIVING give back to others give back to life 12. Fast JE, Forbes D, Keating NC. Contributions and needs of informal elder care providers in Canada: evidence from Statistics Canada's 1996 General Social Survey on social supports. Final technical report to Health Canada, Ottawa, ON. Edmonton: Author 1999. 13. Parks SH, Pilisuk M. Caregiver burden: gender and the psychological costs of caregiving. Am J Orthopsychiatry 1991 ;61 :501-9. 14. Parker G. With Due Care and Attention: a Review of Research on Informal Care. London: Family Policy Studies Centre 1990. 15. Glendinning C. The Costs of Giving Care: Looking Inside the Household. London: Her Majesty's Stationery Office 1992. 16. Martin Matthews A, Campbell LD. Gender Roles, Employment and Informal Care. In: Arber S, Ginn J (Eds). Connecting Gender and Ageing: A Sociological Approach. Buckingham: Open University 1995:pp.l29-43. 17. Hooyman NR, Gonyea J. Feminist Perspectives on Family Care: Policies for Gender Justice. London: Sage 1995. 18. White-Means S, Chang CF. Informal caregivers' leisure time and stress. Journal of Family and Economic Issues 1994; 15: I 17-36. 19. Townson M. Health and Wealth: How Social and Economic Factors Affect our Well-being. Ottawa: Canadian Centre for Policy Alternatives 1999. strengthen relationship and intensity of their caregiving careers may result in their own health being compromised. Health care professionals are strategically placed to monitor the health of these caregiving partners and ultimately to help them maintain their caring capacity. REFERENCES I. Keating N, Fast J, Connidis I, Penning M, Keefe J. Bridging policy and research in eldercare. Canadian Journal on Aging/Canadian Public Policy 1997; Supplement (spring):22-41. 2. Penrod JD. Kane RA, Kane RL, Finch MD. Who cares? The size, scope, and composition of the caregiver support system. Gerontologist 1995; 35:489-97. 3. Tennstedt SL, Crawford SL, McKinlay JB. Is family care on the decline? A longitudinal investigation of the substitution of formal long-term care services for informal care. Milbank Q 1993;71 :601-24. 4. Keating N, Fast J, Frederick J, Cranswick K, Perrier C. Eldercare in Canada: context, content and consequences. Ottawa: Statistics Canada 1999. 5. Walker AJ, Pratt CC, Eddy L. Informal caregiving to aging family members. A critical review. Family Relations 1995;44: 402-11. 6. Chapman NJ, Ingersoll-Dayton B, Neal MB. Balancing Multiple Roles of Work and Caregiving for Children, Adults, and Elders. In: Puryear Keita G, Hurrell JJ Jr. (Eds). Job Stress in a Changing Workforce: Investigating Gender, Diversity, and Family Issues. Washington: American Psychological Association 1994:pp.283-30 I. 7. Scharlach AE. Caregiving and employment: competing or complementary roles? Gerontologist 1994;34:378-85. 8. Barusch AS. Problems and coping strategies of elderly spouse caregivers. Gerontologist 1988;28:677-85. 9. Blieszner R, Alley JM. Family caregiving for the elderly: an overview of resources. Family Relations 1990;39:97-102. 10. CARNET:The Work and Eldercare Research Group. Work and family: the survey. Ottawa: CARNET: Canadian Aging Research Network 1993: 1-3 I. I I. Fitting M, Rabins P, Lucas MJ, Eastham J. Caregivers for dementia patients: a comparison of husbands and wives. Gerontologist 1986;26:248-52. JOURNAL SOGC Diagnosis of Endometial Cancer in Women with Abnormal Vaginal Bleeding This issue of the Journal SOGC includes a Self-Directed Learning Module on the diagnosis of endometial cancer in women with abnormal vaginal bleeding. This module qualifies for credits under Section 4 of the Maintenance of Certification Programme of the Royal College ofphysicians and Surgeons of Canada. Don't miss this valuable self-directed learning module on the management of low malignant potential tumour of the ovary. Supported by an un restricte d educational grant from )Af WYETH-AYERST W CANA DA INC FEBRUARY 2000