ASSIGNEMNT DUE BY SOON

A Profile of Family Caregivers in Ontario

2 THE CHANGE FOUNDATION

ABOUT THE CHANGE FOUNDATION

The Change Foundation (TCF) is an independent health policy think-tank that works to inform positive change in Ontario’s health care system. With a firm commitment to engaging the voices of patients, family caregivers and health and community care providers, TCF explores contemporary health care issues through different projects and partnerships to evolve our health care system in Ontario and beyond. Created in 1995 through an endowment from the Ontario Hospital Association, TCF is dedicated to enhancing patient and caregiver experiences and Ontario’s quality of health care.

Following five years of work on patient engagement, The Change Foundation shifted its focus in March 2015 with the release of Out of the Shadows and Into the Circle—a new strategic plan designed to explore the critical, but often unrecognized contributions and experiences of family caregivers. The plan builds on our patient engagement work, and was developed from multiple in-depth consultations and guided by the advice of our Board of Directors. Given TCF’s mandate to promote, support and improve health and the delivery of health care in Ontario, the plan focuses on the experience of caregivers within the health care system and explores ways to strengthen the ability of health care providers and the system to work more effectively with caregivers.

ACKNOWLEDGEMENTS

The Change Foundation gratefully acknowledges Stephanie Hylmar, Research Associate, for her leadership in the development, analysis and writing of Family Caregivers in Ontario.

TERMINOLOGY

The term “family caregiver” is used interchangeably with the term “caregiver” in this report. Both terms refer to the people—family, friends, neighbours—who provide critical and often ongoing personal, social, psychological and physical support, assistance and care, without pay, for loved ones in need of support due to frailty, illness, degenerative disease, physical/ cognitive/mental disability, or end of life circumstances.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 3

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FOREWARD

CATHY FOOKS CEO, THE CHANGE FOUNDATION MAY 2016

Our health care system is dependent on unpaid caregivers. And the reality is that these caregivers are often not recognized or respected for the role they play. At best, there is an inconsistent approach to family caregivers. In many cases, they are not even considered as key members of the care team.

“ ” THE CHANGE FOUNDATION, STRATEGIC PLAN, 2015-2020

OVER THE LAST DECADE, HEALTH CARE IN ONTARIO HAS INCREASINGLY BECOME MORE COMMUNITY- AND HOME-BASED. WITH SHORTER HOSPITAL STAYS AND AN INCREASED FOCUS ON HOME CARE SERVICES, PEOPLE NOW HAVE THE ABILITY TO INDIVIDUALLY MANAGE THEIR HEALTH CONDITIONS AT HOME. HOWEVER EVEN THOUGH THESE OPTIONS EXIST, IN MOST CASES A FAMILY MEMBER OR FRIEND IS ALSO LIKELY PROVIDING SOME KIND OF CARE AND SUPPORT AT DIFFERENT STAGES IN THE HEALTH CARE JOURNEY.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 5

In recent years, a tremendous amount of work has been done to examine the patient perspective and improve their experiences as they transition in and out, as well as across, the health care system.

But what about the family caregivers who accompany these patients throughout their experience?

As part of the first year of our Out of the Shadows and Into the Circle strategic plan, The Change Foundation spent the winter of 2016 hearing directly from family caregivers through a project called The Caring Experience. Through a partnership with the Ontario Caregiver Coalition, we hosted a variety of in-person workshops with family caregivers to hear their stories and understand their experiences and interactions with Ontario’s health and community care system. We were particularly focused on how Ontario’s health care system does, or does not, recognize and support family caregivers as part of a patient’s care team. Some of what we heard was inspirational. Some of it was heartbreaking.

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We also organized sessions with health care providers and staff to understand their perspective on what makes it hard or easy to work directly with family members to support a patient.

In just a short time, we were able to hear from hundreds of caregivers, but as this report highlights, there are over 3 million people in Ontario providing support and care to a family member, friend or neighbour.

We did a comprehensive review of the Ontario data from Statistics Canada’s 2012 General Social Survey to get a picture of who those 3 million people are and to understand the kind of supports they provide - which range from emotional support, transportation and housekeeping to performing medical tasks such as tube feeding, wound care and giving injections.

Survey respondents reported major impacts on their own lives as a result of being a family caregiver including financial hardship, an inability to concentrate at work and in some cases having to leave their jobs—either voluntarily or not.

Caregivers in the survey and those we heard from directly all reported increased levels of stress as the demands of family caregiving started to weigh on them.

Caregivers in the survey and those we heard from directly all reported increased levels of stress as the demands of family caregiving started to weigh on them.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 7

These findings and our deeper review of the Ontario GSS data underscore the importance of the role of family caregivers, and more importantly, the need to create awareness, understanding and recognition for their work and how it contributes to the day-to-day functioning of Ontario’s health care system. We can’t underestimate just how much they do to keep the health care system moving, and for us, it makes the focus of our work more urgent than ever. This report, and all of the work we have done in our first year, serves as a call to action. We need to recognize the role of family caregivers in the system, support them in it, and ensure the systems are in place to facilitate their ability to provide the care in between physician and health care visits.

The Change Foundation wants to change the environment for family caregivers. The next phase in our Strategic Plan work, will be working with organizations that are interested in working differently with family members in support of a patient’s care. By putting our money where our mouth is, we hope to inspire change across the system, and improve the experience for patients and caregivers.

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EXECUTIVE SUMMARY

FAMILY CAREGIVERS ARE PEOPLE—FAMILY, FRIENDS, NEIGHBOURS—WHO PROVIDE CRITICAL AND OFTEN ONGOING PERSONAL, SOCIAL, PSYCHOLOGICAL AND PHYSICAL SUPPORT, ASSISTANCE AND CARE, WITHOUT PAY, FOR FAMILY MEMBERS AND FRIENDS IN NEED OF SUPPORT DUE TO FRAILTY, ILLNESS, DEGENERATIVE DISEASE, PHYSICAL/ COGNITIVE/MENTAL DISABILITY, OR END OF LIFE CIRCUMSTANCES.

THIS IN-DEPTH REVIEW OF STATISTICS CANADA’S 2012 GENERAL SOCIAL SURVEY (GSS) DATA1

SPECIFIC TO ONTARIO IS A FIRST STEP IN BETTER UNDERSTANDING ONTARIO’S FAMILY CAREGIVERS. THE DATA HELP TO PAINT A MORE COMPLETE PICTURE OF FAMILY CAREGIVERS IN A NUMBER OF KEY DEMOGRAPHIC CATEGORIES, INCLUDING GENDER, HEALTH, AND SOCIO-ECONOMIC STATUS. MORE IMPORTANTLY, THE DATA ALSO SHED LIGHT ON SOME OF THE REASONS WHY FAMILY CAREGIVERS PROVIDE CARE, THE TYPES OF ACTIVITIES ASSOCIATED WITH THE CAREGIVING ROLE, AND THE IMPACTS THESE ACTIVITIES HAVE ON THE LIVES OF FAMILY CAREGIVERS IN ONTARIO.

THE CHANGE FOUNDATION (TCF) HOPES THAT BY SHOWCASING THE VARIETY OF CAREGIVING EXPERIENCES AS REPRESENTED IN THE GSS DATA, THIS REPORT CAN SERVE AS AN IMPORTANT STARTING POINT FOR ONTARIO POLICY AND DECISION MAKERS, AS WELL AS ORGANIZATIONS SIMILAR TO TCF, FOR FURTHER INVESTIGATION AND ACTION IN SUPPORTING CAREGIVERS IN THEIR ROLE.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 9

METHODOLOGY

The data in this report comes from the General Social Survey (GSS), conducted by Statistics Canada in February 2012. The survey was conducted over the phone with care receivers and caregivers. The survey asked questions about the amount of care family caregivers provide, the kinds and amounts of care received, and the unmet needs of both care recipients and caregivers. Questions about employment, housing and socio-demographic characteristics were also asked. The survey had a total of 23,093 participants from across Canada of whom 6,850 (29.7%) were from Ontario. Of the Ontario participants, 2,213 (32%) said that they provided help or care to a friend, family member or both in the past 12 months. This report focuses on the responses of the caregivers. We have extrapolated from these data, weighting numbers and percentages in order to reflect the entire population of Ontario. From this sample we can draw general conclusions about the characteristics and the state of caregivers in Ontario. Appendix A provides more detail about the survey and limitations of the survey data.

1 To learn more about the GSS and the data refer to Appendix A.

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An estimated 3.3 million Ontarians, 29% of the provincial population, are family caregivers.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 11

KEY FINDINGS

In reviewing the data, a number of key findings became evident, which are outlined below.

Who are family caregivers?

An estimated 3.3 million Ontarians, 29% of the provincial population, are family caregivers who provide care and support to a chronically ill, disabled, or aging family member or friend. A majority of these caregivers, 53% (1.8 million), are women while 47% (1.5 million) are men.

Family caregivers vary in age, with the largest proportion (23%) between 45 and 54 years of age. Of the balance, 11% are over the age of 65, 19% are 55 to 64, and 17% are 15 to 24. There are no data on caregivers under the age of 15 as they were not included in the GSS survey.

The majority of caregivers (65%) are married or living in common law relationships. More than one in four (27%) are single and have never been married. Almost three in 10 caregivers (29%) have one or more children under the age of 14.

In terms of proximity to the person being cared for, 30% of caregivers live in the same household as those they care for, 50% live in a community less than an hour away by car, and 20% live in a community that is one or more hours away by car.

Family caregivers have attained a wide range of education—from less than high school to post graduate education. Four percent of caregivers (almost 124,000 individuals) reported that they postponed enrolling in an education or training program because of their caregiving responsibilities, and 63% of these caregivers (over 78,000 people) said that their plans are postponed indefinitely because of their caregiving duties.

Ontario has the most culturally diverse population in Canada and more than one in four residents were born outside the country.2 This diversity is reflected in the Ontario caregiver population and 21% of caregivers reported that their primary language was other than English or French.

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2 http://www.ontarioimmigration.ca/en/about/OI_ABOUT_PEOPLE.html

Three out of four caregivers (76% or 2.5 million people) report that they try to balance caregiving with paid employment. Thirty-two percent of caregivers (802,000 people) have one or more children under the age of 14 at home and are also employed.

Three percent of caregivers (92,000 people) receive some form of income supplement such as social assistance/welfare, Employment Insurance, child tax benefit, or workers’ compensation.

When considering annual household income and hours of caregiving, those with higher household incomes report contributing more hours a week to caregiving activities. For example, 28% of caregivers who provide 10 or more hours per week earn $100,000 or more a year, compared to 10% of caregivers who earn $40,000 to $60,000. Similarly, 37% of caregivers who provide between two and nine hours a week earn $100,000 or more, compared to 11% of caregivers who earn $40,000 to $60,000. There may be barriers for lower income earners, restricting their options in providing care for their loved ones.

Who are caregivers caring for?

Eighty-four percent of caregivers are providing care to a family member: 47% of caregivers are looking after parents or in- laws; 24% are looking after a grandparent, sibling or extended family member; 7% are providing care to a spouse; and 6% are providing care to a child. Another 13% are caring for a friend, colleague or neighbour. Caregivers are caring for more female (57%) than male (43%) care recipients. This trend

could be explained by the longer life expectancy of females. In Ontario, the life expectancy for women is 84, while for men it is 79 (Statistics Canada, 2012).

Notably, one million people (31% of caregivers) said they felt they had no choice in taking on their caregiving responsibilities.

The characteristics and needs of those receiving care vary with age, diagnosis and disability. Age-related needs are the most common problem requiring caregiving as 28% of caregivers report that they provide care for people with problems associated with aging. However, this

84% of Ontario caregivers are providing care to a family member.

2.5 million caregivers report that they try to balance caregiving with paid employment.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 13

percentage may be an underestimate as caregivers also report providing care for “other health problems” that are often related to aging (e.g., osteoporosis, incontinence, eye or joint problems, liver or kidney disease). As Ontario’s population ages, the severity and frequency of these age-related health conditions could also increase. Ten percent of caregivers provide care for someone with cancer, 10% care for people with cardiovascular disease and 7% provide care to someone with mental illness.

What are caregivers doing?

Family caregivers spend an average of 11 hours a week providing care. Many caregivers (48% or 1.5 million people) spend anywhere from two to nine hours a week providing care. Twenty-three percent (771,000 people) spend between 10 and 99 hours per week providing care. Twenty-one percent (702,000 people) spend an hour or less per week providing care. Two percent or 77,000 caregivers are in a very intense caregiver situation, providing 100 or more hours per week of care. Six percent (196,000 people) do not know how many hours of care they provided in an average week.

Caregivers who spend two to nine hours a week are mostly caring for family or friends who are aging (51%), have Alzheimer’s disease or dementia (57%), back problems (54%), or respiratory problems (55%). Caregivers who spend over 10 hours a week, with an average of 24 hours a week, are mostly caring for people with developmental disorders (51%) or an accidental injury (48%). Caregivers who spend over 100 hours per week are caring for people with Alzheimer’s disease or dementia, mental illness, or cancer.

Nine in 10 caregivers (90%) reported that they help their loved ones with emotional support and companionship. Almost eight in 10 caregivers (79%) provide transportation assistance; 57% provide assistance with indoor domestic tasks, including meal preparation, housecleaning and laundry; and 53% help with outdoor tasks, including home and property maintenance. Almost three in 10 caregivers (29%) report that they perform medical treatments such as tube feedings, wound care and

Family caregivers spend an average of 11 hours a week providing care.

29% of caregivers report that they perform medical treatments such as tube feedings.

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injections and 25% of caregivers assist with personal care such as bathing, toileting, eating, assistance moving around and personal hygiene.

As well, almost four in 10 caregivers (37%) report that they take responsibility for scheduling and coordinating appointments, including medical appointments.

What are the impacts of caregiving?

The 2.5 million caregivers who juggle caregiving with paid employment report that caregiving had an impact on their work in the previous 12 months: 30% (741,000 people) were late for work or had to leave early; 29% (735,000 people) missed an average of six days of work because of caregiving duties; and 1% (33,000 caregivers) left their employment—they either quit or were fired—because of their caregiving responsibilities.

When asked about their work-life balance over the past 12 months, 45% of caregivers (1.5 million people) had some degree of difficulty fulfilling family responsibilities, including caregiving, because of work and 41% (1.3 million people) experienced some degree of difficulty concentrating on work responsibilities because of their combined family and caregiving responsibilities.

Almost one in 10 caregivers (9% or 297,000 individuals) report financial hardship because of their caregiving responsibilities. Of these caregivers 33% had to borrow money from a family member or friend; 34% had to take a loan from a financial institution; 20% had to sell assets; 77% had to use their savings to support their caregiving; and 90% have had to modify their spending and budgeting.

Almost half of all caregivers (47% or 1.6 million individuals) report having some level of stress (“somewhat” to “high”) that stems from their caregiving duties, and of these almost one in 10 (9% or 300,000 people) were in the high stress range.

Those who found caregiving stressful were asked about the triggers to their stress. Twenty- four percent (384,000 people) reported they were stressed with balancing caregiving with their other responsibilities (e.g. child rearing, employment, etc.); 23% (368,000 people)

1.6 millions caregivers report having some level of stress that stems from their caregiving duties.

Almost four in 10 caregivers (37%) report that they take responsibility for scheduling and coordinating appointments.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 15

were stressed over the declining health of those they cared for; 18% (288,000 people) were stressed with meeting the needs of those they cared for; 15% (240,000 people) were stressed over managing their own emotions; 14% (224,000 people) were stressed over their relationship with those they cared for (i.e. getting along with them, managing their mood); 8% (128,000 people) were stressed about the decisions they had to make; 7% (112,000 people) were stressed over managing family conflict about caregiving; and 7% (112,000 people) were stressed about finding services for those they cared for.

Caregivers were asked about their feelings over the previous 12 months of their caregiving duties. Of the 2.3 million caregivers who responded, a candid portrait of their emotions emerged: 55% (1,265,000 people) were worried and anxious; 52% (1,196,000 people) were tired; 38% (874,000) were short tempered and irritable; 36% (828,000) were overwhelmed; 33% (759,000) experienced disturbed sleep; 18% (414,000) felt depressed; 17% (391,000) felt lonely and isolated; and 13% (299,000) experienced loss of appetite.

Interestingly, despite the findings in the previous paragraph, almost half of caregivers (48% or 1.6 million people) report their experience of caregiving as “very rewarding” (26% or 859,000 people) or “rewarding” (22% or 713,000 people), and 16% (538,000 people) report the experience was “somewhat rewarding”. Five percent of caregivers (152,000 people) report that the experience was “not at all rewarding”. Thirty-one per cent of caregivers (one million people) did not answer the question.

Despite the multiple demands and tasks that caregivers take on, 85% of caregivers report that their physical health is “good” to “excellent”, and 82% (3 million people) report that their mental health is “good” to “excellent”. However, 3% of caregivers (104,000 people) rated their physical health as “poor”, and 11% (396,000 people) rate their mental health as “poor”. Regarding overall health, 13% of caregivers (412,000 individuals) report that their overall health during the previous 12 months suffered because of their caregiving responsibilities.

Almost half (48%) of caregivers report their experience of caregiving as “very rewarding” or “rewarding”, and 16% report the experience was “somewhat rewarding”.

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Notably, one million people (31% of caregivers) said they felt they had no choice in taking on their caregiving responsibilities.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 17

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TABLE OF CONTENTS

The Change Foundation Acknowledgements Terminology Forward Executive Summary Introduction I. Who are Ontario’s Family Caregivers?

Gender Age Marital Status Living Situation Time Spent Travelling Community Education Employment Caregiver Personal and Household Income Sources of Caregiver Income Language and Ethnic Background

II. Who are Caregivers Caring For? Relationship Gender Age Why are Caregivers Providing Care? What are Caregivers Doing?

III. What are the Impacts of Caregiving? Impact on Time Impact on Employment and Work-Life Balance Impact on Finances Impact on Physical and Psychological Health Impact on Coping and Health Behaviours Are They Receiving any Support?

Conclusion References APPENDIX A: The GSS Data

2 2 2

4 8 20 22 23 23 24 25 27

27 29 29 30 31 34 33 36 37 37 38 40 42 43 45 47 47 51 52 54 56 57

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TABLE OF FIGURES

Figure 1 Gender of Caregivers Figure 2 Age Range of Caregivers Figure 3 Caregiver Marital Status Figure 4 Caregivers with children under 14 Figure 5 Caregivers with Children under 14 Years of Age as a Function of Gender Figure 6 Caregiver Living Arrangements Figure 7 Caregivers’ Community Figure 8 Time Spent Traveling by Size of Community Figure 9 Caregiver Education by Gender Figure 10 Caregiver Annual Personal Income Figure 11 Caregiver Annual Household Income Figure 12 Caregiver Main Source of Income Figure 13 Main Sources of Income as a Function of Caregiver Age Figure 14 Caregiver Household Income and Time Spent Caregiving Figure 15 Ethnicities of Ontario’s Caregivers Figure 16 Relationship to Care Receiver Figure 17 Age of People Caregivers are Caring for Figure 18 Reasons for Caregiver Support Figure 19 Hours of Caregiver Support per Week by Condition Figure 20 Types of Help Provided by Caregivers Figure 21 Physical Strenuousness of Caregiver Activities Figure 22 Caregivers’ Time Spent Caring as a Function of Gender Figure 23 Caregivers’ Time Spent Caring Related to Absenteeism Figure 24 Types of Help Provided by Caregivers versus Absences at Paid Employment Figure 25 Work-Life Balance Figure 26 Caregiver Stress Figure 27 Caregiver Rewarding Experiences Figure 28 Caregiver Stress Related to Type of Help Figure 29 Caregiver Self-Rated Physical Health Figure 30 Caregiver Self-Rated Mental Health Figure 31 Caregiver Degree of Coping Figure 32 Governmental Financial Support

23 24 24 25 26

27 28 28 29 30 31 31 32 33 34 36 37 38 39 41 41 44 44 45

46 48 48 49 50 51 51 53

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INTRODUCTION

FAMILY CAREGIVERS ARE PEOPLE—FAMILY, FRIENDS, NEIGHBOURS—WHO PROVIDE CRITICAL AND OFTEN ONGOING PERSONAL, SOCIAL, PSYCHO- LOGICAL AND PHYSICAL SUPPORT, ASSISTANCE AND CARE, WITHOUT PAY, FOR FAMILY MEMBERS AND FRIENDS IN NEED OF SUPPORT DUE TO FRAIL- TY, ILLNESS, DEGENERATIVE DISEASE, PHYSICAL/COGNITIVE/MENTAL DISABILITY, OR END OF LIFE CIRCUMSTANCES.

These dedicated individuals play important roles in the lives of the people they care for and, as a result, play a very important role in the Ontario health care system. Family caregivers provide all kinds of support—from picking up groceries and providing transportation to performing essential medical care. Understanding who family caregivers are, the people they support, and their levels of stress, is essential in developing policies and programs that work effectively.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 21

3 To learn more about the GSS and the data refer to Appendix A.

This in-depth review of Statistics Canada’s 2012 General Social Survey (GSS) data3 specific to Ontario is a first step in better understanding the province’s family caregivers. The data help to paint a more complete picture of family caregivers in a number of key demographic categories, including gender, health, and socio-economic status. More importantly, the data also shed light on some of the reasons why family caregivers provide care, the types of activities associated with the caregiving role, and the impacts these activities have on the lives of family caregivers in Ontario.

The Change Foundation (TCF) hopes that by showcasing the variety of caregiving experiences as represented in the GSS data, this report can serve as an important starting point for Ontario policy and decision makers, as well as organizations similar to TCF, for further investigation and action in supporting caregivers in their role.

Family Caregivers in Ontario lays important groundwork for the evolution of Ontario health care into a system that better serves, not just family caregivers, but also patients, providers, and health administrators.

METHODOLOGY

The data in this report comes from the General Social Survey (GSS), conducted by Statistics Canada in February 2012. The survey was conducted over the phone, with care receivers and caregivers. The survey asked questions about the amount of care family caregivers provide, the kinds and amounts of care received, and the unmet needs of both care recipients and caregivers. Questions about employment, housing and socio-demographic characteristics were also asked. The survey had a total of 23,093 participants from across Canada of whom 6,850 (29.7%) were from Ontario. Of the Ontario participants, 2,213 (32%) said that they provided help or care to a friend, family member or both in the past 12 months. This report focuses on the responses of the caregivers. We have extrapolated from these data, weighting numbers and percentages in order to reflect the entire population of Ontario. From this sample we can draw general conclusions about the characteristics and the state of caregivers in Ontario. Appendix A provides more detail about the survey and limitations of the survey data.

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PART

1 WHO ARE ONTARIO’S FAMILY CAREGIVERS?

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 23

In Ontario, 3.3 million people, 29% of the province’s population, provide some form of care or support to a chronically ill, disabled and/or aging family member or friend. They provide emotional support, assistance with transportation, and help with domestic tasks (inside and outside the home). They schedule appointments and provide medical treatments and personal care. The percentage of caregivers in Ontario is slightly, but not significantly, higher than the Canadian population’s national caregiving average of 28% or about 8.1 million Canadians.

GENDER

Of the 3.3 million caregivers, a slight majority are women.

AGE

Ontario’s family caregivers vary in age. However, many tend to be in the mid-part of their lives. Very little is known about caregivers under the age of 15 as they were not included in the GSS survey.

I. WHO ARE ONTARIO’S FAMILY CAREGIVERS?

53% women (N= 1.8 million)

3.3 million

47% men (N= 1.5 million)

Figure 1 Gender of Caregivers

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MARITAL STATUS

Caregivers have a variety of family types, and living situations. The majority (65%) of caregivers are married or living in common law relationships. More than one in four caregivers (27%) are single and have never been married.

“15 to 24” 17% (N= 543,000)

“25 to 34” 15% (N= 495,000)

“35 to 44” 15% (N= 477,000)

“45 to 54” 23% (N= 769,000)

“55 to 64” 19% (N= 623,000)

“65 to 74” 8% (N= 260,000)

“75 and up” 3% (N= 114,000)

Rounded to the nearest thousand

Figure 2 Age Range of Caregivers

Figure 3 Caregiver Marital Status

Married 59% (N= 1,922,000)

Common-law 6% (N= 202,000)

Widowed 3% (N= 94,000)

Separated 2% (N= 62,000)

Divorced 3% (N= 116,000)

Single, never married 27% (N= 883,000)

Not stated 0% (N= 3,000)

Rounded to the nearest thousand

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 25

Figure 4 Caregivers with children under 14

Three or more 3% (N= 105,000)

Two children 11% (N= 366,000)

One child 15% (N= 486,000)

None 71% (N=2,300,000)

Rounded to the nearest thousand

+

LIVING SITUATION

When a caregiver has multiple responsibilities these usually include, alongside caregiving, professional responsibilities and/or caring for children living in the home.

Family caregivers who have children in the home and also have caring responsibilities for their own parent(s) have been referred to as the “sandwich generation.”

Of Ontario’s 3.3 million family caregivers, 29% (N= 957,000) have one or more children who are under the age of 14.

There are slightly more females than males with children in the home 53% (N= 507,000) are women and 47% (N= 450,000) are men.

The proportion of males and females with children in the home is equal. However more women are family caregivers, so it is not surprising that there are more women who have one or more children, under the age of 14 years old, in the home.

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Figure 5 Caregivers with Children under 14 Years of Age as a Function of Gender

0

500,000

1,000,000

1,500,000

2,000,000

0 1 2 3+ children child children children

Caregivers, rounded to the nearest thousand

MEN WOMEN

3% 58,000 11% 190,000 15% 260,000

71% 1.3 million

3% 49,000 11% 180,000 15% 221,000

71% 1.1 million

1.5 million 1.8 million

Of the caregivers, almost half are in intact families (49%); more than a quarter are part of a couple (27%); 15% are part of step families or lone parent families; and almost one in 10 (9%) have no spouse/partner or children.4

Of the 9% (N= 309,000) of caregiver families that are lone parent families: • 63% (N= 196,000) are female led • 37% (N= 113,000) are male led

A higher percentage of female family caregivers are single parents, compared to male family caregivers who are single parents.

4 The terms used here to describe living arrangements are Statistics Canada terminology.

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Figure 6 Caregiver Living Arrangements

0 450,000 900,000 1,350,000 1,800,000

Couple only 27%

Intact family 49%

Step-family with common child 2%

Step-family without common child 4%

Lone parent family 9%

No spouse/partner or children 9%

890,000

1,606,000

57,000

120,000

309,000

299,000

Caregivers, rounded to the nearest thousand

TIME SPENT TRAVELING

The living situation of the caregiver in relation to the care receiver is important as it has a potential influence on how frequently they are able to provide care and how much time they spend traveling to and from the care receiver’s household:

• 30% of caregivers live in the same household or building • 50% of caregivers live in similar communities under an hour away by car • 20% of caregivers live one or more hours away, by car, from the loved one

they are caring for

COMMUNITY

The majority of caregivers in Ontario live in larger urban population centres while fewer than one in five caregivers live in Ontario’s rural areas and small population centres.5 The community they live in determines the types of services and supports that caregivers have access to.

5 As defined by Statistics Canada, large urban population centres have a population of 100,000 or more. Rural and small population centres have a population of between 1,000 and 99,999. “Population centre” includes all population living in the cores, secondary cores and fringes of metropolitan areas and agglomerations.

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Figure 7 Caregivers’ Community

Figure 8 Time Spent Traveling by Size of Community

6 Two-thirds of the caregivers who participated (N= 2 million) did not respond to the question about travel time. The GSS has no explanation as to why there was such a large non-response for caregiver time spent traveling.

68% (N= 110,000)

2% (N= 3,000)

9% (N= 14,000)

12% (N= 20,000)

3% (N= 4,000)

5% (N= 9,000)

1% (N= 2,000)

82% (N= 38,000)

0% (N= 0)

8% (N= 4,000)

0% (N= 0)

9% (N= 4,000)

0% (N= 0)

1% (N= 500)

Rounded to the nearest thousand

Same Household

Same Building

<10min by car

10 to <30min by car

30min to <1h by car

1h to <3h by car

3h or more by car

Large Urban Population Centres Rural Areas and Small Population Centres

Of those who responded to questions about both their living situation and their time spent traveling (N= 209,000), the majority of caregivers in rural areas live in the same household as the person they are caring for (82%) or less than one hour away by car (17%). Those who live in large urban centres also live in the same household the majority of the time (68%), however more caregivers in urban centres are traveling to see the person they are caring for by car, anywhere from 10 minutes to three hours or more.6

86% URBAN

(N= 2,828,000)

14% RURAL (N= 453,000)

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 29

EDUCATION

The levels of education for family caregivers vary widely from less than high school to post- graduate education.

Figure 9 Caregiver Education by Gender

0 200 400 600 800 1,000

University certificate or degree above a bachelor's

Bachelor's degree

University certificate below a bachelor's

College, or other non-university designation

Trade certificate or diploma

High school or equivalent

Less than high school

Not stated / unknown

4% 141 4% 126

9% 281 10% 334

1% 43 | 2% 76

12% 388 16% 498

.08% 49 | .07% 27

13% 440 16% 477

5% 179 6% 202

.2% 8 | .3% 12

Male Female *caregivers thousands

Four percent (N= 124,000) of caregivers postponed enrolling in an education or training program because of their caregiving responsibilities.

Of those caregivers reporting that they postponed their education, 63% (N= 78,000) said that their plans are postponed indefinitely because of their caregiving duties.

EMPLOYMENT

• 76% (N= 2.5 million) of caregivers juggle caregiving with paid employment.

• 32% (N= 802,000) of “sandwich generation” caregivers—who are caregiving and have one or more children under the age of 14 at home—were also employed.

30 THE CHANGE FOUNDATION

CAREGIVER PERSONAL AND HOUSEHOLD INCOME

Median personal income in Ontario is $31,820 a year (Statistics Canada, 2013).

Thirty-seven per cent (N= 1.2 million) of caregivers have a personal income below $40,000. Over half of caregivers (62%) have a personal income below $60,000 or no income at all. Thirteen per cent (N= 429,000) did not report their annual personal income.7

Figure 10 Caregiver Annual Personal Income

No income or loss 8% (N= 268,000)

Less than $40,000 37% (N= 1,231,000)

$40,000 - $59,999 17% (N= 549,000)

$60,000 - $79,000 10% (N= 329,000)

$80,000 - $99,999 8% (N= 228,000)

$100,000 and up 7% (N= 265,000)

Not Reported 13% (N= 429,000)

Rounded to the nearest thousand

No income or loss 8% (N= 268,000)

Less than $40,000 37% (N= 1,231,000)

$40,000 - $59,999 17% (N= 549,000)

$60,000 - $79,000 10% (N= 329,000)

$80,000 - $99,999 8% (N= 228,000)

$100,000 and up 7% (N= 265,000)

Not Reported 13% (N= 429,000)

Rounded to the nearest thousand

In Ontario, the median annual household income for families who are either couples, families with or without children, and lone-parent families is $76,510 (Statistics Canada, 2013).

• 35% (N= 1.2 million) of caregivers have a household annual income greater than $100,000. • 21% (N= 645,000) of caregivers have a household annual income of less than $60,000. • 23% (N= 661,000) of caregivers did not report their annual household income.8

7 The GSS has no explanation as to why there was such a large non-response for annual personal income. 8 The GSS has no explanation as to why there was such a large non-response for annual household income.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 31

Figure 11 Caregiver Annual Household Income

No income or loss 0% (N= 12,000)

Less than $40,000 11% (N= 331,000)

$40,000 - $59,999 10% (N= 314,000)

$60,000 - $79,000 10% (N= 306,000)

$80,000 - $99,999 11% (N= 340,000)

$100,000 and up 35% (N= 1,132,000)

Not Reported 23% (N= 661,000)

Rounded to the nearest thousand

No income or loss 0% (N= 12,000)

Less than $40,000 11% (N= 331,000)

$40,000 - $59,999 10% (N= 314,000)

$60,000 - $79,000 10% (N= 306,000)

$80,000 - $99,999 11% (N= 340,000)

$100,000 and up 35% (N= 1,132,000)

Not Reported 23% (N= 661,000)

Rounded to the nearest thousand

SOURCES OF CAREGIVER INCOME

Three per cent (N= 92,000) of all caregivers are on some form of income supplement such as social assistance/welfare, Employment Insurance, child benefits, or workers’ compensation.

Figure 12 Caregiver Main Source of Income

0 500 1000 1500 2000

Not Stated Other Income

Child Tax Benefit Social Assistance / Welfare

Old Age Security Pensions (Retirement/CPP)

Workers' Compensation Employment Insurance (EI)

Investments / RRSPs Self-Employment

Employment No Income

*caregivers (thousands)

86 81 18 35 43 371 3 36 55 305 1,979 266

32 THE CHANGE FOUNDATION

Employment by traditional means and self-employment are the most prevalent sources of income for caregivers between the ages of 15 and 64. Income for caregivers 65 and older mostly comes from pensions or investments and RRSPs. Social Assistance/welfare is used by all age groups relatively equally, whereas Employment Insurance (EI) is most frequently used by caregivers aged 25 to 34 and then sparingly by caregivers between the ages of 35 to 64. The largest group of caregivers (26%) with no income falls between the ages of 15 and 24.

Figure 13 Main Sources of Income as a Function of Caregiver Age

20%

40%

60%

80%

100%

532,000 480,000 463,000 742,000 607,000 256,000 112,000

Age 15-24 25-34 35-44 45-54 55-64 65-74 75+

Other Income 3% 3% 2% 1% 5% 1% Child Tax Benefit 1% 1% 1% 0.5% 0.3%

Welfare/Income Supplement 1% 2% 1% 1% 1% 1% 1% Old Age Security 0.2% 9% 16%

Pensions 1% 2% 18% 62% 68% Workers’ Compensation 0.5% 0.3%

E I 4% 1% 1% 0.3% Investments/RRSPs 1% 1% 1% 3% 5% 11%

Self-Employed 3% 8% 13% 14% 11% 8% 2% Employed 65% 78% 76% 73% 55% 13% 2%

No Income 26% 4% 4% 6% 6% 1%

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 33

When considered together, household income and hours of care show an interesting trend. Those in the highest household income bracket report contributing more hours per week to caregiving activities. This could be a function of various factors, but barriers may exist for lower-income earners, restricting their options in providing care to their loved ones.

Figure 14 Caregiver Household Income and Time Spent Caregiving

0 100 200 300 400 500 600

Not Reported

$100,000+

$80,000 - 99,000

$60,000 - 79,000

$40,000 - 59,000

Less than $40,000

27% 21% 16%

28% 37% 48% 12% 10% 11% 8% 11% 9%

10% 11% 9%

15% 10% 7%

227 320 114

235 561 336

102 158 80

70 170 66

84 165 65

128 162 41

*caregivers (thousands) 10+ hours 2-9 hours 1 hour (or less)

34 THE CHANGE FOUNDATION

When asked about their primary language:

• 72% of caregivers said their primary language was English • 21% of caregivers reported that they spoke a language other than English or French • 4% said their primary language was French • 3% did not state their primary language.

LANGUAGE AND ETHNIC BACKGROUND

Ontario has the most culturally diverse population in Canada and more than one in four residents were born outside the country. Each year, Ontario welcomes over 100,000 newcomers—nearly half of all of Canada’s immigrants (Ontario, 2015). This diversity is reflected in the profile of Ontario’s caregivers.

Figure 15 Ethnicities of Ontario’s Caregivers

0 500,000 1,000,000 1,500,000

Scottish, Irish, British, and the Isles

European (Central, East and West)

Canadian (English)

Other

Not Stated

South Asian (East Indian, Sri Lankan, Pakistani, Punjab)

Chinese

Canadian (French)

Aboriginal (North American Indian, Métis, Inuit)

34% | 1,154,000

22% | 735,000

16% | 533,000

9% | 319,000

7% | 246,000

5% | 182,000

3% | 90,000

3% | 85,000

1% | 24,000

Caregivers, rounded to the nearest thousand

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 35

PART

2 WHO ARE CAREGIVERS CARING FOR?

36 THE CHANGE FOUNDATION

II. WHO ARE CAREGIVERS CARING FOR?

Based on those surveyed and the weighted data from the GSS, approximately 854,000 people in Ontario are being cared for, by one or more family caregivers, because of a long-term health condition, a physical or mental disability, or problems related to aging.

One million people—31% of caregivers—said they felt they had no choice in taking on their caregiving responsibilities.

RELATIONSHIP

The relationships between caregivers and care receivers vary, but the majority of caregivers (84% or 2.7 million people) are providing care to family members, while fewer are providing care to a friend, colleague or neighbour (13% or 420,000 people). Overall:

• 47% of caregivers are looking after parents or in-laws • 24% are looking after a grandparent, sibling or extended family • 13% are caring for a close friend, neighbour or colleague9 • 7% are providing care to a spouse • 6% are providing care to a child

0 500,000 1,000,000 1,500,000 2,000,000

Parent or In-Law

Other Family Member

Close friend, neighbour, or colleague

Spouse

Child

Other Relationship

Not Stated

47% | 1,556,000

24% | 772,000

13% | 420,000

7% | 233,000

6% | 182,000

2% | 81,000

1% | 37,000

Caregivers, rounded to the nearest thousand

Figure 16 Relationship to Care Receiver

9 The high percentage of caregivers who said they were providing care to a close friend, colleague or neighbour were mostly providing care to a close friend 8.4% (N= 275,000) and neighbour 4.4% (N= 141,000). Not many were providing care to a colleague 0.2% (N= 4,000).

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 37

Figure 17 Age of People Caregivers are Caring for

10 The GSS has no explanation as to why there was such a large non-response for care receivers’ age.

GENDER

Caregivers are caring for more female than male care recipients. This finding could perhaps be explained by the longer life expectancy for females. In Ontario, life expectancy for the average female is 84 while for males it is 79 years of age (Statistics Canada, 2012).

AGE

Caregivers were asked the age of those they care for. Fifty-three per cent of caregivers did not state the age of the care receiver.10 The 30% who did answer the question said they were caring for older adults (over age 55) and the other 17% said they were caring for people under age 54.

25 to 34 3% (N= 26,000)

35 to 44 4% (N= 38,000)

45 to 54 10% (N= 82,000)

55 to 64 12% (N= 103,000)

65 to 74 9% (N= 79,000)

75+ 9% (N= 75,000)

Not Stated 53% (N= 452,000)

Rounded to the nearest thousand

57% women (N= 488,000)

43% men (N= 366,000)

38 THE CHANGE FOUNDATION

WHY ARE CAREGIVERS PROVIDING CARE?

The characteristics and needs of those receiving care vary with age, diagnosis and disability. In Ontario, caregivers reported that age-related needs were the most common problem requiring caregiving.

• 28% of caregivers provide care for people with problems associated with aging.

As Ontario’s overall population ages, the severity and frequency of these age-related health conditions could also increase.

While GSS data show that 28% of care provided by caregivers is to people with problems related to aging, this may be an underestimate. The category “Other Health Problems” accounts for 12% of the reasons for providing care and includes conditions that may be related to aging. These include osteoporosis, urinary or bowel incontinence, eye problems, joint problems, surgery, liver disease, kidney disease and digestive diseases. These conditions are not exclusively related to aging, but many of them can be associated with it.

Figure 18 Reasons for Caregiver Support

0 100 200 300 400 500 600 700 800 900 1000

Not Answered 2% Physical Disability 2%

Respiratory Problems 2% Developmental Disorder 2%

Back Problem 3% Diabetes 3% Arthritis 4%

Accident Injury 4% Neurological Disease 5%

Alzheimer's Disease or Dementia 6% Mental Illness 7%

CV Disease 10% Cancer 10%

Other Health Problems 12% Aging 28%

71 56 71 69 94 99 141 146 178 198 221 314 332 380 911

*caregivers (thousands)

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 39

Figure 19 Hours of Caregiver Support per Week by Condition

Caregivers who spend two to nine hours per week on average are mostly caring for family or friends who are aging (51%), have Alzheimer’s disease or dementia (57%), back problems (54%), or respiratory problems (55%).

Caregivers who spend over 10 hours of care a week are mostly caring for family or friends who have developmental disorders (51%) or who have been injured in an accident (48%).

Caregivers who spend on average 100 hours in a week caregiving are caring for people who have Alzheimer’s disease or dementia (5%), some form of mental illness (4%), cancer (4%) or other health problems (3%).

Note: The measure “10+h/week” (in Figure 19 below) has a range of one to 98 hours with an average of 24 hours of care per week.

1h/Week or less 2-9

h/Week 10+

h/Week 100+

h/Week Not Stated/ Applicable

Aging 23% 51% 14% 1% 11% Other Health Problems 17% 45% 24% 3% 11% Cancer 11% 46% 32% 4% 7% CV Disease 20% 44% 25% 2% 9% Mental Illness 17% 48% 20% 4% 11% Alzheimer's or Dementia 6% 57% 26% 5% 6% Neurological Disease 20% 41% 28% 2% 8% Accident Injury 10% 31% 48% 1% 11% Arthritis 17% 52% 18% 2% 11% Diabetes 15% 44% 31% - 9% Back Problem 10% 54% 33% - 5% Developmental Disorder - 28% 51% 13% 9% Respiratory Problems 7% 55% 26% 3% 10% Physical Disability 29% 38% 23% - 11% Not Answered 34% 32% 13% - 21%

40 THE CHANGE FOUNDATION

WHAT ARE CAREGIVERS DOING?

The assistance provided by caregivers is related to the needs of those they are caring for— needs that are unique and change over time. These needs are age-related, disease specific, mental-health related, specific to developmental disabilities or medical fragility, or related to palliative care.

Of the 3.3 million caregivers in Ontario, almost all (90%) said they help their loved ones with emotional support. Caregivers help to enrich the social and emotional experience of the loved one they are caring for. They arrange for social events (visits and outings) and provide emotional support and companionship.

Caregivers assist with various tasks that range from personal to technical: 79% of caregivers assist with transportation needs; 57% help with various indoor domestic tasks, such as meal preparation, shopping, housecleaning, laundry, chores, and home maintenance; and 53% help with outdoor tasks, including gardening, shoveling snow, raking leaves and walking pets. These sorts of activities are known as Instrumental Activities of Daily Living (IADLs).

One-quarter of caregivers also assist with more personal care provision, such as bathing, toileting, eating, personal hygiene and assistance moving around. These are known as Activities of Daily Living (ADLs).

Caregivers handle much of the coordination and management for the care receiver: 37% schedule and coordinate appointments and 31% manage finances.

It is worth noting that almost one-third of caregivers (29%) are performing medical treatments such as tube feedings, wound care, and injections.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 41

Figure 20 Types of Help Provided by Caregivers

Figure 21 Physical Strenuousness of Caregiver Activities

0 500,000 1,000,000 1,500,000 2,000,000 2,500,000 3,000,000

90% Emotional Support

79% Transportation Needs

57% Indoor Domestic Tasks

53% Outdoor Tasks

37% Scheduling Appointments

31% Manage Finances

29% Medical Treatments

25% Personal Care Provision

5% Other Tasks

2,948,000

2,577,000

1,883,000

1,729,000

1,219,000

1,016,000

940,000

811,000

168,000

Caregivers, rounded to the nearest thousand

When asked about the strenuous nature of the tasks they perform, 35% (N= 1,154,000) of caregivers said the tasks were somewhat to very strenuous, while almost an equal amount, 37% (N= 1,209,000), said these tasks were not strenuous at all. However, 28% (N= 919,000) did not state the physical strenuousness of their caregiving activities.11

Very Strenuous 3% (N= 106,000)

Strenuous 6% (N= 182,000)

Somewhat Strenuous 26% (N= 866,000)

Not Strenuous at All 37% (N= 1,209,000)

Not Stated 28% (N= 919,000)

Rounded to the nearest thousand

11 The GSS has no explanation as to why there was such a high non-response for physical strenuousness of caregiver activities.

42 THE CHANGE FOUNDATION

WHAT ARE THE IMPACTS OF CAREGIVING?

PART

3

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 43

Time spent caregiving takes time away from a person’s other family responsibilities as well as from their professional duties. Time is also taken from social activities and personal relationships, which can cause emotional stress, a sense of isolation, or feelings of being overwhelmed (Lum et al., 2011).

IMPACT ON TIME

The average caregiver spends eleven hours a week on their family caregiving duties:

• 47% (N= 1.5 million) of caregivers spend anywhere from two hours a week to nine hours a week providing different types of care to the care receiver

• 24% (N= 771,000) spend anywhere between 10 to 99 hours of care per week • 21% (N= 702,000) spend one hour or less on caregiving per week • 6% (N= 196,000) of caregivers do not know the time they spend caregiving, and • 2% (N= 77,000) of caregivers are in a very intense caregiving situation. These

caregivers are providing 100 or more hours per week of care to their loved one. This is the equivalent of more than two full-time jobs.

When time spent caregiving is considered in relation to gender, women are spending more time providing care when compared to men.

• 29% of female caregivers spend 10 or more hours a week providing care • 22% of male caregivers spend 10 or more hours a week providing care • 17% of female caregivers spend less than one hour a week caregiving • 26% of male caregivers spend less than one hour a week caregiving

III. WHAT ARE THE IMPACTS OF CAREGIVING?

44 THE CHANGE FOUNDATION

Figure 22 Caregivers’ Time Spent Caring as a Function of Gender

Figure 23 Caregivers’ Time Spent Caring Related to Absenteeism

0 400 800 1,200 1,600 *caregivers (thousands)

Both Women Men

Don’t Know

10+ Hours

2-9 Hours

1 Hour (or less)

6% 6% 6%

26% 29% 22% 47% 48% 46% 21% 17% 26%

Caregivers who spend two to 10 or more hours a week caring for their family member(s) tend to have the highest rates of absenteeism from paid employment. Caring for one hour a week has no noticeable effect on absenteeism.

Note: The measure “10+ Absences” has a range of 10 to 95 times absent from work in the last 12 months, with an average of 20 absences.

0 100,000 200,000 300,000 400,000 500,000 600,000 700,000 800,000

75% 7% 6%

13%

34% 29%

8% 5%

25%

27% 45%

4% 3%

21%

100%

100+ Hours

10+ Hours

2-9 Hours

1 Hour (or less)

58,000 5,000 4,000

10,000 262,000 223,000 58,000 35,000 191,000 409,000 693,000 66,000 39,000 330,000

702,000

*persons (thousands)

{ { {

0 1-5 6-9 10+ Not Stated Absences Absences Absences Absences

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 45

IMPACT ON EMPLOYMENT AND WORK-LIFE BALANCE

The 2.5 million caregivers (76%) who are trying to balance caregiving and paid employment were asked about the impact caregiving has had on their work in the past 12 months:

• 30% (N= 741,000) came in to work late or left early because of caregiving duties • 29% (N= 735,000) missed six days per year (on average) of paid employment

because of caregiving duties • 1% (N= 33,000) quit their jobs voluntarily, or were fired, within the past year because

of their caregiving responsibilities

When asked about absenteeism from paid employment due to caregiving tasks, caregivers said the most absences from work are a result of assisting care receivers with transportation, indoor and outdoor tasks, and medical treatments.

• 26% of the caregivers providing transportation were absent from their paid employment one to 10 or more times within the last 12 months, but

• 28% of the caregivers providing transportation were not absent at all.

Note: The measure “10+ Absences” has a range of 10 to 95 times absent from work in the last 12 months, with an average of 19 absences. Also, almost half the respondents did not state their amount of absences in the last 12 months, but the GSS does not comment as to why.

Figure 24 Types of Help Provided by Caregivers versus Absences at Paid Employment

0 Absences 1-5

Absences 6-9

Absences 10+

Absences Not Stated

Transportation Needs 28% 18% 3% 5% 46% N= 2,577,000

Indoor Domestic Tasks 29% 20% 3% 6% 42% N= 1,883,000

Outdoor Tasks 30% 19% 19% 5% 43% N= 1,729,000

Scheduling Appointments 25% 21% 4% 8% 42% N= 1,219,000

Managing Finances 20% 22% 4% 8% 46% N= 1,016,000

Medical Treatments 23% 24% 5% 8% 40% N= 940,000

Personal Care 25% 22% 5% 8% 41% N= 811,000

Other Tasks 19% 22% - - 56% N= 168,000

46 THE CHANGE FOUNDATION

When asked about their work-life balance over the past 12 months of caregiving:

• 45% (N= 1.5 million) of caregivers had some degree of difficulty fulfilling family responsibilities, including caregiving, because of work

• 41% (N= 1.3 million) of caregivers experienced some degree of difficulty concentrating on work responsibilities because of their family and caregiving responsibilities

The majority of caregivers (53%) are either satisfied or very satisfied with their work- life balance. However 8% are dissatisfied, and 13% say they are neither satisfied nor dissatisfied about it.12

Figure 25 Work-Life Balance

Very Satisfied or Satisfied 53% (N= 1,700,000)

Dissatisfied 8% (N= 257,000)

Neither Satisfied nor Dissatisfied 13% (N= 425,000)

Not Stated 26% (N= 853,000)

Rounded to the nearest thousand

Very Satisfied or Satisfied 53% (N= 1,700,000)

Dissatisfied 8% (N= 257,000)

Neither Satisfied nor Dissatisfied 13% (N= 425,000)

Not Stated 26% (N= 853,000)

Rounded to the nearest thousand

12 The GSS has no explanation as to why there was such a large non-response for work-life balance.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 47

IMPACT ON FINANCES

When asked about their financial situation, 9% (N= 297,000) of caregivers said they experienced financial hardship because of their caregiving responsibilities. Of these caregivers:

• 33% had to borrow money from a family member or friend • 34% had to take a loan from a financial institution • 20% had to sell off their assets • 77% had to use or defer to their savings to support their caregiving • 90% have had to modify their spending and budgeting

IMPACT ON PHYSICAL AND PSYCHOLOGICAL HEALTH

Approximately half of Ontario’s caregivers acknowledge that providing care for aging family members is stressful, and stress is one of the main contributors to ill health and chronic disease (Roddenberry & Renk, 2010; Turcotte, 2013). Between 2009 and 2014, the percent of caregivers caring for long-stay home clients who reported being distressed doubled from 15.6% in 2009/10 to 33.3% in 2013/14 (HQO, 2016).

In the GSS data, caregivers experience both rewards and stresses from their caregiving duties:13

• 48% (N= 1.6 million) reported their experience as “very rewarding” or “rewarding” • 47% (N= 1.6 million) reported having some level of stress (high to somewhat) that stems

from their caregiving duties and of those almost 1 in 10 (9%) report that they are highly stressed

• 23% (N= 750,000) reported that their caregiving was “not at all stressful” • 30% (N= 1,000,000) and 31% (N= 1,018,000), respectively, did not report on their stress

or their rewarding experience

13 The question about stress and the question about rewarding experience were not answered by, respectively, 30% and 31% of caregivers (approximately 1 million participants). The GSS has no explanation as to why there was such a large non-response for these two questions.

48 THE CHANGE FOUNDATION

Figure 26 Caregiver Stress

Figure 27 Caregiver Rewarding Experiences

Highly Stressful 9% (N= 296,000)

Stressful 11% (N= 366,000)

Somewhat Stressful 27% (N= 892,000)

Not at all Stressful 23% (N= 750,000)

Not Answered 30% (N= 1,000,000)

Rounded to the nearest thousand

Highly Stressful 9% (N= 296,000)

Stressful 11% (N= 366,000)

Somewhat Stressful 27% (N= 892,000)

Not at all Stressful 23% (N= 750,000)

Not Answered 30% (N= 1,000,000)

Rounded to the nearest thousand

Very Rewarding 26% (N = 859,000)

Rewarding 22% (N= 713,000)

Somewhat Rewarding 16% (N= 538,000)

Not at all Rewarding 5% (N= 152,000)

Not Answered 31% (N= 1,018,000)

Rounded to the nearest thousand

Very Rewarding 26% (N = 859,000)

Rewarding 22% (N= 713,000)

Somewhat Rewarding 16% (N= 538,000)

Not at all Rewarding 5% (N= 152,000)

Not Answered 31% (N= 1,018,000)

Rounded to the nearest thousand

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 49

Caregivers were asked whether they felt tired, worried, anxious, overwhelmed, lonely, isolated, short tempered, irritable, resentful, or depressed over the last 12 months of their caregiving duties. Of the 2.3 million who answered, a candid portrait emerged:

• 55% (N= 1,265,000) were worried and anxious • 52% (N= 1,196,000) were tired • 38% (N= 874,000) said they were short tempered and irritable • 36% (N= 828,000) said they were overwhelmed • 33% (N= 759,000) experienced disturbed sleep • 18% (N= 414,000) were depressed • 17% (N= 391,000) said they felt lonely or isolated • 16% (N= 368,000) were resentful • 13% (N= 299,000) had experienced a loss of appetite

Figure 28 Caregiver Stress Related to Type of Help

0 500,000 1,000,000 1,500,000 2,000,000 2,500,000 3,000,000

Transportation Needs

Indoor Domestic Tasks

Outdoor Tasks

Scheduling Appointments

Managing Finances

Medical Treatments

Personal Care

Other Tasks

10% 13% 29% 21% 27%

13% 14% 31% 21% 21%

9% 11% 30% 24% 25%

17% 21% 31% 15% 16%

17% 17% 32% 14% 19%

18% 19% 35% 13% 15%

16% 21% 33% 16% 15%

12% | 13% | 23% | 18% | 34%

2,577,000

1,883,000

1,729,000

1,219,000

1,016,000

940,000

811,000

168,000

Rounded to the nearest thousand Very Stressful Somewhat Not at all Not Stated Stressful Stressful Stressful

50 THE CHANGE FOUNDATION

When the 47% (N= 1.6 million) of caregivers who found caregiving stressful were asked what specifically they felt were triggers to their stress:

• 24% (N= 384,000) said that the most stressful part of caregiving is balancing it with their other responsibilities (e.g. child rearing, employment, etc.)

• 23% (N= 368,000) said dealing with the care receiver’s declining health • 18% (N= 288,000) said meeting the needs of the care receiver was stressful • 15% (N= 240,000) said the most stressful was managing their own emotions • 14% (N= 224,000) said getting along with the care receiver/managing the care

receiver’s mood • 8% (N= 128,000) said making decisions for the care receiver was stressful • 7% (N= 112,000) said managing family conflict about caregiving • 7% (N= 112,000) said finding services for the care receiver was especially stressful

Despite the multiple demands and tasks caregivers are taking on, they rated their physical health and mental health as fairly high:

• 85% said their physical health is “good” to “excellent” • 82% of caregivers rate their mental health as “good” to “excellent” • 3% rate their physical health as poor • 11% rate their mental health as poor

Figure 29 Caregiver Self-Rated Physical Health

Excellent 22% (N= 722,000)

Very Good 35% (N= 1,154,000)

Good 28% (N= 926,000)

Fair 10% (N= 324,000)

Poor 3% (N= 104,000)

Not Stated 2% (N= 51,000)

Rounded to the nearest thousand

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 51

IMPACT ON COPING AND HEALTH BEHAVIOURS

When asked how they are coping with their caregiving role, 68% of caregivers report that they are coping “very well” or “generally well” with the responsibilities. However, more than a quarter of caregivers (28%, or 920,000 people) did not answer the question about degree of coping.14

Figure 30 Caregiver Self-Rated Mental Health

Figure 31 Caregiver Degree of Coping

Excellent 27% (N= 984,000)

Very Good 30% (N= 1,079,000)

Good 25% (N= 920,000)

Fair 6% (N= 216,000)

Poor 11% (N= 396,000)

Not Stated 1% (N= 43,000)

Rounded to the nearest thousand

Very Well 32% (N= 1,068,000)

Generally Well 36% (N= 1,185,000)

Not Very Well 3% (N= 86,000)

Not Well at All 1% (N= 23,000)

Not Stated 28% (N= 920,000)

Rounded to the nearest thousand

14 The GSS has no explanation as to why there was such a large non-response for degree of coping.

52 THE CHANGE FOUNDATION

Of the 109,000 caregivers who said they are coping “not very well” and “not well at all”:

• 14% (N= 15,000) said that during the past 12 months their caregiving responsibilities have affected the amount of alcohol they consume: ‧ 9% (N= 10,000) said their alcohol consumption increased ‧ 1% (N= 1,000) of caregivers said they started drinking

• 4% (N= 5,000) said that during the past 12 months their caregiving responsibilities have affected their smoking habits by increasing the number of cigarettes they smoke

When asked about their overall health 13% (N= 412,000) of all caregivers said that during the past 12 months of caregiving their overall health suffered because of their caregiving responsibilities.

ARE THEY RECEIVING ANY SUPPORT?

Various economic burdens are placed on caregivers, including out-of-pocket monetary and time costs:

• 2.8 million caregivers (85%) do not receive any financial support from their friends or family for their caregiving efforts

• 3.1 million caregivers (93%) did not receive any financial support or federal tax credits from the government

Yet, in 2009, it was estimated that if the care provided by unpaid family caregivers was, instead, provided by the paid workforce, the cost—taking into consideration the number of hours of care provided, current market rates and usual employee benefits—would be $25 to $26 billion annually (Hollander et al., 2009).

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 53

In the survey, 79% (2.6 million) of caregivers said they received 10 hours or more of help in an average week from a paid worker, government agency, or volunteer organization. The hours of in-home help received by caregivers for their loved ones is encouraging, however no question was asked about the usefulness or quality of this help.

Almost one-quarter (24% or N= 785,000) of family caregivers said they would like to receive other types of supports. When these caregivers were asked about what kind of supports:

• 46% (N= 360,000) want financial support, government assistance or tax credits • 30% (N= 235,000) want more home care and support provided to the care recipient • 16% (N= 125,000) want occasional relief or more opportunities for respite care • 13% (N= 103,000) want information or advice • 11% (N= 89,000) said they wanted more help from medical professionals • 10% (N= 80,000) would like more community services and volunteer support • 9% (N= 73,000) want emotional support or counselling

Figure 32 Governmental Financial Support

0 700,000 1,400,000 2,100,000 2,800,000 3,500,000

Did Not Receive Financial Support

Received Financial Support

93% N= 3,051,000

7% N= 233,000

Caregivers, rounded to the nearest thousand

54 THE CHANGE FOUNDATION

CONCLUSION

Family caregivers are a vital part of Ontario’s society. They are important to their loved one(s), for the healthcare system, and to the economy. They give up personal time and resources to care for someone else who is in need. The impact that the act of caregiving has on these individuals varies, but for some there may be a considerable toll in terms of physical or mental strain.

The GSS data contained within this report objectively show the different factors that may affect the extent to which caregivers provide support or care. These factors include:

• Age, gender and living situation of the caregiver • Location and proximity to the care receiver • The socio-economic status of the caregiver, including education, employment, and

financial status • The relationship between the caregiver and the care receiver (e.g. family, friend,

neighbour etc.) • The type of illness, disorder, or chronic health condition of the care receiver • The types of activities, tasks, or other forms of help performed by the caregiver and • Any specific demands on the caregiver including, but not limited to, various

workplace, parental, or other personal commitments.

Though this report refrains from making any direct commentary on these findings, the data help to highlight key areas for further investigation by Ontario researchers and policy makers.

The Change Foundation considers this report to be a foundation for supportive policy and program development that can help bring more value and recognition to the role of caregiving. It will be essential to involve family caregivers in this development process in order to ensure that their voices are heard with others across the health care sector.

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 55

There is work to be done, but if done together, we can continue to evolve Ontario’s health care system in a positive direction.

56 THE CHANGE FOUNDATION

Hollander, M. J., Liu, G., Chappell, N. L. (2009). “Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle aged and older unpaid caregivers providing care to the elderly.” Healthcare Quarterly, 12(2); 42-49.

Health Quality Ontario HQO. (2015). Measuring Up, A yearly report on how Ontario’s health system is performing. Toronto, Ontario. Retrieved from: http://www.hqontario.ca/portals/0/Documents/pr/measuring-up-2015-en.pdf

Lum, J., Hawkin, L., Liu, J., Ying, A., Sladek, J., Peckham, A., Williams, P. (July 2011). In Focus Backgrounder: Informal Caregivers. Canadian Research Network for Care in the Community (CRNCC).

Ontario. (2015). People and Culture. Queens Printer for Ontario, 2009. Retrieved from: http://www.ontarioimmigration.ca/en/about/OI_ABOUT_PEOPLE.html

Roddenberry, A. & Renk, K. (2010). “Locus of control and self-efficacy: potential mediators of stress, illness, and utilization of health services in college students.” Child Psychiatry Human Development; 35 (6): 353-370.

Statistics Canada. (2012). Life expectancy at birth, by sex, by province. Ottawa, Ontario. Retrieved from: http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/health26-eng.htm

Statistics Canada (2013). Median total income, by family type, by province and territory (All census families). Retrieved from: http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/famil108a-eng.htm

Statistics Canada (2013). Individuals by total income level, by province and territory (Ontario). Retrieved from: http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/famil105g-eng.htm

Turcotte, M. (2013). Family Caregiving: What are the Consequences? Ottawa: Statistics Canada. Retrieved from: http://www.statcan.gc.ca/pub/75-006-x/2013001/article/11858-eng.htm

REFERENCES

A PROFILE OF FAMILY CAREGIVERS IN ONTARIO 57

The data in this report, unless stated otherwise, comes from Cycle 26 of the General Social Survey (GSS), a Statistics Canada program made up of a series of independent, annual, cross-sectional surveys, each covering a specific topic in-depth.

The GSS survey was conducted in February 2012 covering the topics of caregiving and care receiving for a long-term health condition, disability or problem related to aging. The survey was conducted over the phone, with a care receiver and a caregiver. The survey asked questions about: the amount of care family caregivers provide, the kinds and amounts of care received, the unmet needs of those who need care but are not receiving it. There were also questions about employment, housing and socio-demographic characteristics. The survey had a total of 23,093 participants from across Canada. Of these participants, 6,850 (29.7%) were from Ontario. Of the Ontario participants 2,213 (32%) said that they provided help or care to a friend, family member or both. The data presented here are weighted numbers and percentages of those responses that have been extrapolated to represent Ontario’s population.

There are a number of limitations to using the data from the General Social Survey. These include: the methods used to collect the date by phone (i.e. random digit dialing); the day on which the caregiver was interviewed could affect their responses (i.e. high stress day versus a low stress day); the data was collected by a secondary source (Statistics Canada); the responses were weighted; garnering participation by multiple members of the same household can be challenging; the length of the survey may have discouraged completion (many questions and sections were not asked to all participants); and the lack of qualitative explanation (the high non-response for some questions is not explained or commented on).

Keeping the limitations of the data in mind, the GSS does serve as a representative sample of the population that is providing informal unpaid care. From this sample we can draw general conclusions as to the characteristics and state of caregivers in Ontario.

To find out more about the GSS, or to learn how to access the full data set, please contact Statistics Canada, or visit their website: http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=4502.

APPENDIX A: THE GSS DATA

CONTACT US

The Change Foundation P.O. Box 42 200 Front Street West, Suite 2501 Toronto, ON M5V 3M1

www.changefoundation.ca

Copyright: The Change Foundation 2016

Reading Links 1.docx

Factors influencing education choices

http://www.kuyeb.com/pdf/en/729a9c30d1b319bbd1b27f88a4ad74b1ENTAM.pdf

https://www.investopedia.com/articles/investing/102914/7-factors-affect-your-life-insurance-quote.asp

https://www.ncbi.nlm.nih.gov/books/NBK206912/

Sandwich Generation

https://www.statcan.gc.ca/pub/75-001-x/10904/7033-eng.htm

https://www.investopedia.com/terms/s/sandwichgeneration.asp

Intimate Relationship affected by Family, Religion, Culture and Education

http://brewminate.com/social-institutions-family-religion-and-education/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2533156/

http://www1.lsbu.ac.uk/ahs/downloads/families/familieswp2.pdf

Care giving in different households

https://www.ncbi.nlm.nih.gov/books/NBK396398/

or

https://www.nap.edu/read/23606/chapter/5#98

Profile of family caregivers PDF

Parental Leaves

https://www.canada.ca/en/services/benefits/ei/ei-maternity-parental.html

https://www.canada.ca/en/services/benefits/ei/ei-maternity-parental/eligibility.html

https://www.canada.ca/en/services/benefits/ei/ei-maternity-parental/while-receiving.html

Nature vs Nurture

https://www.verywellmind.com/what-is-nature-versus-nurture-2795392