Status of Women Committee on Feb. 18th, 2021

[The Chair, Conservative, Marilyn Gladu]

Welcome to meeting number 16 of the House of Commons Standing Committee on the Status of Women.

Today's meeting is taking place in hybrid format, pursuant to the House order of January 25, 2021. The proceedings will be available via the House of Commons website. Today we're continuing our study of women's unpaid work.

To the witnesses, welcome. When you're speaking, please speak slowly and clearly for the translators. When you're not speaking, your mike should be on mute.

We're pleased today to have Tracy Johnson from the Canadian Institute for Health Information. She is the director. From the Ontario Caregiver Organization, we have Amy Coupal, the chief executive officer.

Each of you will have five minutes to make your initial comments before we go to our round of questions. When you have one minute left in your five minutes, you will see the yellow pen. That's how you will know to wind it up, and then we will go to questions.

We will begin with Ms. Johnson for five minutes.

[Tracy Johnson, Director, Health System Analysis and Emerging Issues, Canadian Institute for Health Information]

Thank you.

On behalf of the Canadian Institute for Health Information, thank you for the opportunity to appear before the committee. I acknowledge that the land I’m speaking to you from today is on the traditional territories of the Wendat, the Anishinabe nation, the Chippewa, the Haudenosaunee Confederacy and the treaty lands and territory of the Mississaugas of the Credit. I recognize that it is now the home of many diverse first nations, Inuit and Métis people.

Today I will share information on the distress experienced by caregivers, including those who care for people with dementia and for people who require palliative care. While our data sources are rich, there are some limitations. We aren’t able to break down caregiver data by sex, because that type of data isn’t collected. Information about caregivers, such as caregiver distress, is collected indirectly through home care assessments that are done on the people who receive home care. However, these assessments don’t include the sex, age or ethnicity of the caregiver.

Our data shows that approximately 96% of Canadians who received home care services on a long-term basis had an unpaid caregiver. More than one in three unpaid caregivers in Canada were distressed. Distress was twice as high among people who lived with the individual they cared for, compared with those who did not. Among the caregivers who co-resided, about half were spouses and a third were adult children who cared for their parents.

Distressed caregivers spent an average of 38 hours a week providing care, which is the equivalent of a full-time job. Seven out of 10 caregivers in distress cared for someone who needed substantial help in at least one personal care activity. Personal care can include activities such as bathing, eating, dressing and personal hygiene.

Caregivers who cared for a senior with dementia were more likely to provide more hours of care. CIHI’s report, “Dementia in Canada”, found that caregivers of seniors with dementia provided an average of 26 hours of care each week. This is substantially higher than the 17 hours provided by caregivers of those without dementia. Caregivers of seniors with dementia were also more likely to experience distress than those caring for other seniors, and they were even more likely if the person with dementia displayed verbal or physical aggression.

There are also added financial challenges to caring for people with dementia, such as home modifications, professional health care or rehab services, assistance with daily activities, transportation, travel or accommodation, specialized aids or devices, and drugs. The Alzheimer Society of Canada estimates that caregivers of people with dementia paid $1.4 billion in 2016 in total out-of-pocket costs, and it projects that this amount will rise to $2.4 billion in 2031.

Caregivers play a critical role in supporting loved ones who receive palliative home care. CIHI’s report, “Access to Palliative Care in Canada”, found that almost all palliative home care clients had family or friends who provided care, making it possible for them to stay at home. Across Canada, these caregivers were mostly children or spouses of the palliative care client. About two-thirds of palliative home care clients lived with their family caregiver, compared with just over half of other home care clients. In some provinces, such as Alberta, you must have a family caregiver to qualify for palliative home care.

We found that nearly one-third of family and friend caregivers of palliative home care clients experienced distress. High rates of caregiver distress might signal a need for more effective and appropriate home care services and community supports to help caregivers manage care for both their loved ones and themselves.

While our data sources are robust, there are a few caveats to the information I have presented. Our data includes information on those caring for people receiving home care services for longer than 60 days, and not all jurisdictions are included. The data represents all regions of Newfoundland and Labrador, Nova Scotia, Ontario, Saskatchewan and the Yukon, all regions of Alberta except the Calgary zone, and all regions of British Columbia except the northern health region.

Thank you for the opportunity to present this information. I'm happy to answer any questions.

[The Chair, Conservative, Marilyn Gladu]

That's excellent.

Now we'll go to Amy, for five minutes.

[Amy Coupal, Chief Executive Officer, Ontario Caregiver Organization]

Thank you and good morning to the members of the Standing Committee on the Status of Women. I really appreciate the opportunity to present to you here today.

I am here as the CEO of the Ontario Caregiver Organization, a non-advocacy organization that gives voice to Ontario's caregivers and provides research, support programs and services to caregivers with the goal of enhancing the caregiver experience in Ontario. The role of caregiver is one I know well from personal experience.

Ontario has 3.3 million unpaid caregivers who provide essential health and emotional care to family members, friends or neighbours with a physical and/or mental health challenge, both in their homes and in health care settings such as hospitals, long-term care and retirement homes, group homes and treatment centres. The majority of caregivers in Ontario are women at 54%. The largest age category at 41% of caregivers is between the ages of 46 and 65.

Our organization tracks the caregiver experience through our annual “Spotlight on Ontario's Caregivers” report. This year we found that before the COVID-19 outbreak, 47% of women provided up to four hours of care in a typical week, 15% between five to nine hours, and almost one-third, at 29%, provided care for more than 10 hours per week. Since the outbreak, the hours put in for caregiving have increased, with 18% now providing care for five to nine hours and 31% providing care for more than 10 hours per week.

One of the primary needs that we hear from caregivers, which I would like the committee to understand and recognize, is that caregivers want to be valued and seen as essential within the continuum of care, as the emotional, practical and medical support they provide is vital to the journey of the care recipient. This need has become especially apparent during the pandemic. Also of primary concern with caregivers is the inclusion of the caregiver in designing health care transformation and policy.

The other predominant theme we hear from caregivers is that they are struggling to cope. Fifty per cent of women caregivers admit that the overall management of caregiving responsibilities is stressful. Caregivers are concerned about their own mental health. This was the case before the pandemic, and it is certainly worse now. The toll and stress impact work as well as productivity.

Half of women caregivers are stressed about balancing their caregiving responsibilities and work. Among those who are employed and are caregiving, a quarter have taken some time off during the day. Twenty-five per cent of caregivers have done this. Twenty-seven per cent of caregivers have taken a few days off while one-fifth—somewhere between 15% and 19%—have reduced or altered their working hours to manage caregiving.

Forty-three per cent tell us that they wish there was more support from their employers. For 38%, their work hours are not flexible enough to allow them to manage their caregiving responsibilities, and 33% are worried that they may lose their jobs because of their caregiving responsibilities, which I think is definitely notable.

The economic toll on women caregivers is also growing. One-third, or 31%, find it stressful to manage finances, pay bills and pay for care receiver's needs, medicine, supplies and more. Thirty-nine per cent of women caregivers are experiencing financial hardships, which 14% say are due to their caregiving responsibilities. Four in 10, or 41% of caregivers, use their personal finances, and 35% say they've been using their savings to pay for caregiving expenses. Between 30% and 33% of women caregivers say they are incurring more costs and are using more of their personal finances to pay for caregiving expenses since the outbreak.

Overall in Ontario, 80% of caregivers say they are responsible for paying for the expenses of the person they are caring for. Caregivers need specialized and caregiver-focused support programs, respite and services. Our organization is one of the few that offer these, but national programs and services do not widely exist.

While we can't predict how long this pandemic will last, we know that there are a growing number of new caregivers, and many of those who were caregiving before the pandemic need extra support. The caregiver experience is improved when we are inclusive of caregiver voices, especially those of women caregivers, who are the majority of caregivers, and continue to adapt and respond with new resources, policies and programming to improve the caregiver experience as we look to recover.

Thank you.

[The Chair, Conservative, Marilyn Gladu]

Thank you very much.

We will go to our first round of questions. Each person will have six minutes. I will try to cut you off kindly when you get to the end of your six.

We'll begin with Ms. Wong for six minutes.

[Alice Wong, Conservative, Richmond Centre, BC]

Thank you, Madam Chair.

Thank you to both witnesses. Caring for the carers has always been close to my heart. I am a caregiver myself.

Both of you have given us alarming figures and statistics telling us, and telling the whole nation, hopefully, especially national policy-makers, that this has become a very urgent concern. There's an urgent need to support those who care for their loved ones. We are looking at terms like “unpaid family caregivers” or “unpaid work”. Globally, we have different terms. In England they call them “carers”. Caring for the carers is one line of focus, and I have questions for both of you.

First of all, you mentioned the role of business owners and employers in terms of support. What would you suggest? While I was the minister for seniors, I started a panel for employers and their support. It's very important, especially for people who are working and balancing between family and work. Could either of you shed more light, please, on the need for business owners and other employers to understand the importance of their staff who now have to give up their productivity?

[Amy Coupal]

This is a really critical question. We know that some caregivers feel safe and comfortable raising the issue of their caregiving responsibilities with their employers. However, some do not. They fear reprisal or even termination in asking for something as simple as understanding, or for practical accommodations or modifications to their work circumstances. I think the number one thing we would love to see is a greater understanding on the part of employers about the things caregivers are doing and why it's so important that there is a context for having that dialogue in any employment situation.

The other thing is to recognize and understand that different working circumstances require different types of conversations. Many of us in this meeting right now have the luxury of being able to work from home, but that is not always feasible in certain working circumstances for anyone in an employment situation. We encourage employers to look at other creative solutions around scheduling, split shifts and different ways employees could potentially fulfill their responsibilities outside of the standard schedule or accommodations that might be available.

The first step, surely, is dialogue and understanding. In many ways, the pandemic has helped to shine a light on that.

[Alice Wong, Conservative, Richmond Centre, BC]

Thank you.

My other question focuses on palliative home care. Obviously, end-of-life care is very crucial, not only for the one who is going but also for the one who is staying. The need for more palliative care and, therefore, hospices is so important for end-of-life caring.

Tracy, you mentioned this. Can you add more information on it?

[Tracy Johnson]

Our data talks specifically about caregivers' distress. These are folks who are on home care. We know that only about 15% of people who are on home care actually receive palliative home care. The combination of getting home care in when you have an illness, any kind of an illness, is compounded yet again when you have cancer. There are various programs across the country. There's no evenness with respect to who gets home care and how they can access it.

What we hear from home care clients, or caregivers of folks who require palliative care, is that often they don't know what the options are that are available to them until it's really too late. Having that kind of support is very important. We don't have a lot of data on it at the moment, because not all provinces are required to work using our interRAI palliative care assessment. That would give us more information on what actually happens with palliative care in home care.

[Alice Wong, Conservative, Richmond Centre, BC]

What strikes me is the experience of our former colleague who passed away and who actually was the champion for more palliative care and hospices. That's why it's so close to my heart.

My other question is about—

[The Chair, Conservative, Marilyn Gladu]

I'm sorry. That's your time.

Now we're going to Ms. Zahid for six minutes.

[Salma Zahid, Liberal, Scarborough Centre, ON]

Thank you, Chair, and thanks to both witnesses for the important information they have provided us.

I will start with a question for Ms. Coupal.

You mentioned in your opening remarks that the number of hours for caregiving has increased for women during this pandemic, and you mentioned that over 39% are facing financial hardship. As a pandemic measure, our government introduced the Canada recovery caregiving benefit, which replaces income for someone who needs to stay home to care for a loved one who needs supervised care.

In diverse communities such as Scarborough, we have a lot of multi-generational households, where care is provided across generations. What specific measures would you recommend on an ongoing basis post-pandemic to allow this intergenerational care to continue? Also, what other recommendations do you think are important? Could you provide some light on that?

[Amy Coupal]

Thank you. It's a really important question, and there are so many different layers to it.

First, I think it's important that you know about the positive feedback we have received from caregivers on the caregiver benefit. It is a welcome opportunity for caregivers to be recognized for their commitment and the sacrifices they make as a part of their caregiving role.

Prior to the pandemic, one of the most common questions we received from caregivers on our helpline was, “What do I do with these tax credits if they don't make a difference to me based on my financial circumstances?” I think that's an important piece of information for us to convey to you: The kinds of financial supports that caregivers often benefit from may be dependent on their particular financial circumstances. They would like to see more opportunity for things like the caregiver benefit to be available in the long term, so that it is a recognition of that time and the input that they're making.

The other thing that I think your question highlights in terms of that intergenerational caregiving is that many people who receive care from caregivers will receive that care from several different people, whether they are family members, community members, etc. Whilst we are in firm support of the recognition of essential caregivers—and that's been very important in hospital and long-term care and other settings—we want to recognize that caregiving is often a collaborative effort amongst family and community members.

One of the challenges that I would ask you to explore is, “How do we recognize the constellation of caregivers that come together and that those caregivers may play different roles and be in different places?” Many families who are dispersed across the country may have different roles. I've certainly experienced that within my family. My sister, who lives in Alberta, did everything she could do at a distance, while I did everything hands-on with my mum while she was going through her cancer and palliative care journey. Recognizing the nuances in that caregiving is very important.

[Salma Zahid, Liberal, Scarborough Centre, ON]

Thank you.

My next question is for Ms. Johnson.

We know that the task of caring for aging parents often falls on women as unpaid work. If women are to be able to choose to participate more fully in the workforce, they need to have the confidence that long-term care is available and that it will provide safe, affordable, quality care.

We have seen that this confidence has eroded during the COVID-19 pandemic. Would you agree that establishing national standards for long-term care is vital to building trust? What would you recommend for what should be included in those national standards?

[Tracy Johnson]

At CIHI, we don't take positions on policy. We're neutral. What I can say is that we see a wide variation right now in infection rates and deaths across Canada in long-term care and, certainly, there is a call for national standards. Really, we don't take a stand on that, so I really can't answer your question any more directly than that.

[Salma Zahid, Liberal, Scarborough Centre, ON]

Ms. Coupal, would you have any suggestions on that? Have you any recommendations that should be included in the national standards, and would you agree that establishing national standards for long-term care is important?

[Amy Coupal]

Similar to CIHI, we take a non-advocacy position on these things. We have been a part of a weekly round table focused specifically on long-term care, and the direction of that dialogue has certainly been in support of that among a wide group of stakeholders who have a very vested interest in long-term care.

From my perspective, our position on standards in any context has been the importance of recognizing caregivers and having a formal mechanism for including them as a part of any policy or standard. We've seen this included in hospitals and in long-term care, where there is a process for recognizing and including family caregivers, not only in terms of access but also as a part of the overall care journey for the person being cared for.

[The Chair, Conservative, Marilyn Gladu]

Thank you very much.

[Salma Zahid, Liberal, Scarborough Centre, ON]

Thank you.

[The Chair, Conservative, Marilyn Gladu]

Ms. Larouche, you have six minutes.

[Andréanne Larouche, Bloc, Shefford, QC]

I want to thank Ms. Coupal and Ms. Johnson for being here. It's very important.

I am my party's status of women critic and seniors critic. We're obviously aware that older women are particularly affected by the caregiver and invisible work issues.

Ms. Johnson, you mentioned home care services. You said you didn't have all the data you needed.

What could help you obtain more data? Would having more data on invisible work and home care services help establish policies to provide more assistance to caregivers in dealing with the mental burden and invisible work?

[Tracy Johnson]

That's a really good question. Right now, as an organization, we would be more interested in expanding the home care data we get and expanding the breadth of that data. As I noted earlier, not all provinces are covered, so we are working hard at CIHI to increase the coverage for that home care data, which gives us a fair amount of rich information on the patients themselves.

At the moment there are no plans to expand what there is around caregivers. It is inadvertently collected, but understanding the palliative care needs, as was spoken about earlier, and expansion of interRAI data to include palliative care assessments across the country would be helpful.

[Andréanne Larouche, Bloc, Shefford, QC]

Thank you very much for your answer, Ms. Johnson.

Ms. Johnson and Ms. Coupal, both of you discussed the data and the importance of providing more assistance to caregivers who are under financial stress. Yes, tax credits are available, but they're entirely non-refundable.

How could at least partly refundable tax credits benefit caregivers, apart from the fact they'd give them a little more money in tax season and relieve financial stress?

I'd like to hear what you have to say on that subject.

[Amy Coupal]

That's an interesting question. I don't have specific data on that, but I think the statistics on what caregivers are paying out of pocket are very notable. When you have 80% of caregivers saying that they are responsible for paying the expenses of the person they are caring for, that gives cause for pause. Financial support for those expenses is really critical, and that includes more than just caregiving expenses. That may be living expenses, such as rent, groceries, etc., so the financial burden there is significant. If there was a method for accounting for and supporting those kinds of expenses, that would make a very significant difference for caregivers.

The other thing I noted in my statements and that I think is related to this question is that caregivers are dipping into their own savings—their retirement savings or savings for some other milestone in their life, such as saving for a home. If a caregiver is dipping into their personal savings, is there a way to offset that if they are putting themselves under a greater financial burden as a result of caregiving?

In terms of your question about refunds, I'd like to gain more insight on that. Generally, what we hear from caregivers around tax credits is that, if they have had to give up work in order to provide care or if they are doing less work, the tax credits may not be of significant benefit to them. It only benefits a certain portion of caregivers, so that's an area we'd like to look into more.

The financial impact on caregivers persists, and ways to assist them would be most welcome.

[Tracy Johnson]

I would agree with that. While we don't go into the financial aspects, we do know that financial stresses contribute to caregiver distress. If you have caregivers caring for the equivalent of a full-time job, especially the ones who are distressed and are at up to 37 or 38 hours a week, then they may or may not be working. The likelihood is that they aren't working. Then they are dipping into cash, dipping into their savings, potentially.

We have heard from caregivers that when services are difficult to access, or they have a cost, then their distress increases. When you combine that, I think anything you can do to alleviate the financial impact would be of benefit.