Working Caregivers: The Invisible Employees

Global Caregiver Advocates Bonus Series: Spotlight On Canadian Caregiver Advocates

• Selma Archer & Zack Demopoulos • Season 1 • Episode 14

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We’re kicking off our Global Caregiver Advocate Series by heading north to spotlight the amazing work being done in Canada. We sat down with three incredible advocates—Christa Haanstra, Sharon Anderson, and Amy Coupal—who are making waves across the country when it comes to caregiver policy, support, and visibility. Join us as we explore how Canada is leading efforts to recognize caregiving as both a personal journey and a workforce strength. 

Episode Highlights:

[2:54] Meet Christa, Sharon & Amy—leaders with personal stories & national impact
[6:46] How National Caregiver Day creates space for awareness and advocacy
[12:06] The National Caregiving Strategy—how it came to be & its goals
[14:32] Paid Family Leave in Canada: progress & gaps
[18:00] Workplace roundtables & the Working Caregiver Project
[27:13] Caregiver education in healthcare: University of Alberta’s model
[32:21] “The Hidden Workforce” report: framing caregiving as economic infrastructure
[40:25] Advanced Caregiving Plans: preparing before crisis
[46:07] Reframing caregiving as a workplace strength
[51:05] Guest “One Wish” for Canadian caregiver policy in the next year 

Featured Guests:

👩‍💼 Christa Haanstra, Founder, 4C Strategy
With 25+ years of strategic leadership experience, Christa uses the power of storytelling to advocate for family caregivers. She champions their integration as essential partners in healthcare and policy.
LinkedIn | Podcast Interview

🎓 Dr. Sharon Anderson, University of Alberta
A researcher and educator with a PhD in Family Gerontology, Dr. Anderson co-leads caregiver-centered education and research to better embed caregiver support in healthcare systems.
LinkedIn | Podcast Interview

💡 Amy Coupal, CEO, Ontario Caregiver Organization
A visionary nonprofit leader supporting Ontario’s 4 million caregivers. Amy’s personal caregiving experiences fuel her mission to amplify caregiver voices and improve systemic support.
LinkedIn | Ontario Caregiver Organization

Links & Resources:

📌 Canadian Centre for Caregiving Excellence (CCCE)
📌 National Caregiver Day – April 1, 2025
  📌 Workplace Roundtable Report
📌 University of Alberta – The Hidden Workforce Report
📌 Ontario Caregiver Spotlight Report (2024)
📌 Caregiver-Centered Care Education
📌 Stories from Real Working Caregivers: Katie MacDonald

🎙️ Check out: Episode 013 with Dr. Donna Benton

Remember to check out our website at invisibleemployeeadvocates.com for more resources, and subscribe to our newsletter for updates!

Amy Coupal:

Recognizing that person as a caregiver, so that when they go into all of their subsequent interactions with that healthcare provider and everybody else that they know, oh, I'm a caregiver, and that they're really included as a part of the care team with information that's being gathered, decisions that are being made. But in particular for transition plans, it's so important that caregivers are included, because they're expected to implement but they need to be a part of that planning. Did

Unknown:

you know that in 2020 there were 53 million caregivers in the United States? And by 2025 this number is expected to grow to 62 point 5,000,073% of these caregivers also have a job. They are called Working caregivers, and they are invisible because they don't talk about their caregiving challenges. Working caregivers, the invisible employees, is a podcast that will show you how to support working caregivers. Join Selma Archer and Zach demopoulos on the working caregivers the invisible employees podcast, as they show you how to support working caregivers.

Zack Demopoulos:

Good morning, good afternoon, good evening, from wherever you are, checking in from or whenever. We thank you for listening to our podcast. I'm Zach Dimopoulos and I'm

Unknown:

Selma Archer. Hey, Selma, how are you? I'm great. How are you doing, Zach, I'm

Zack Demopoulos:

beyond excited. You and I have been talking about putting together a global caregiver advocate bonus series. And today is our first one, and we're going to be spotlighting our neighbors up north, our friendly Canadians. I'm so excited about it. You know, Selma, you and I have talked about this, caregiving is a global role. It's a global necessity. It's a global crisis. And so when I was visiting Toronto, and you know this, Selma, when I was visiting Toronto, not too long ago, visiting my sister up there, I went to the Canadian caregiver Center for Excellence for caregiving, and I got to meet Liv medelson and the executive director and her staff, and we had an hour conversation about how caregiving impacts all of us, regardless of what country is we're in. So Canada actually has a holiday coming up a day to celebrate and raise awareness national caregiver day. It is the first Tuesday of April, just like in the US, it's the third Friday in February. We just had ours on February 20. They're going to have theirs on April 1. So this is very timing, and we can't thank our guests enough for being here. So let's get started. Hello guys. Sharon, Krista Amy,

Unknown:

hi, hi,

Zack Demopoulos:

good to see all of you. Let's get started. Right off the bat, can I have each of you just give us a quick intro of who you are, what you do, and why you do

Christa Haanstra:

for sure? Hi, I'm Krista hanstra. I run a company called foresee strategy, and I have the great pleasure of leading the working caregiver project at the Canadian Center for caregiving excellence with Liv and her team and I, as I do, I need to introduce myself as a working caregiver as well, because I think it's really important that we do that and wear it as a badge of honor. So most importantly, I am a sandwich generation working caregiver, supporting my mom and caring for my dad, who has had dementia for 10 years.

Zack Demopoulos:

Thank you for that, Krista, and by the way, and we're going to put links so anybody who's listening in the car or exercise you do not, do not worry all everything we talk about, we're going to put links in our notes. And there's a podcast I just listened to that I know Krista is going to post about it in the future, but I'll make sure to put a link in it that she talks about her caregiving role with her father. It's incredible. It's amazing. So I am going to put a post women in the middle and thank you to that host. She did a fantastic job. Okay, Sharon, hi.

Sharon Anderson:

I work with Dr jasni Parmar in their caregiver Centered Care Research Program at the University of Alberta in the Department of Family Medicine. And what we do is we produce education for health care, social care and community care providers about how they should be interacting with family caregivers. And because this is an American podcast, thanks to Dr Beth fields from the University of Wisconsin, Madison, it looks like our caregiver Centered Care Education for the health workforce is going to be delivered across Wisconsin to the home health workforce. Wow. Wow.

Zack Demopoulos:

Dr fields, we're going to give you a shout out on that and a link that's fantastic. Look

Sharon Anderson:

at that. And I also, to be fair, I'm a family caregiver. My husband had a stroke 27 years ago, and I know that people that with stroke do better because they've got caregivers. I

Zack Demopoulos:

also heard a podcast that you were on sharing about dementia and Alzheimer's, and that was fantastic. And you did talk about being a spousal caregiver, so thank you for sharing that as well.

Amy Coupal:

Amy, hi. Great to be here. I'm Amy coupe, CEO of the Ontario caregiver organization, and we support the province of Ontario's estimated 4 million caregivers who are caring for those family members, friends and neighbors, anywhere across the lifespan based on their individual physical or mental health needs. So we provide lots of direct to caregiver programs and services, and we also work with our health system partners around solving the challenges that lead caregivers to need us. And that's a really important aspect of our work. So I sometimes describe it as you know, the upstream work and then the downstream work to catch the caregivers when they need us. Like Sharon and Krista, I'm a caregiver. So like Krista, I am a sandwich generation working caregiver, and currently a caregiver for my dad, who's in his late 80s, but I've also been a young caregiver for my brother who had cerebral palsy and my mom through her cancer and palliative care journey. So caregiving is near and dear to my heart, and also really proud to be doing this important work here in Ontario. Wow.

Zack Demopoulos:

Thank you, Amy for sharing that in the US. We call that sandwich the Panini with with how much you're going through, you've got to be really, really well, pressed kind of hard on that, but amazing, amazing sharing that and your caregiver journey. We are so honored to have each of you here. Before we kick off with some questions, I'd like just ask a general question to all three of you, national caregiver day, what does that mean to you? What does it mean to the country? Any special plans that you're celebrating, maybe a little history. Could you share with our listeners what it's all about?

Amy Coupal:

I can jump in if you like. So we always say at the Ontario caregiver organization or OCO, I will use any opportunity to talk about caregivers. So call me anytime. But national caregiver day is really an opportunity for us to shine a light on caregiving, which is often hidden in our societies and even in our families and communities, certainly hidden in many workplaces as well, that people are caregivers. So it's an opportunity for us to bring the conversation about caregiving into spaces that maybe it isn't at other times of the year, and it's also an opportunity to recognize caregivers who often go unrecognized throughout the year for the amazing things that they're doing in in their families, in their homes, at bedside and hospital at appointments, all of the various places that caregivers show up. So we do it to really increase awareness about caregivers, but also to have that opportunity to recognize them as well.

Zack Demopoulos:

I appreciate that, Amy, because sometimes I'll hear that caregiving is actually 365 days a year. Why are we just using one day? But it is a great day to do some of those great things that you talked about. Great. Sharon, yeah,

Sharon Anderson:

so in in 2002 Roy Roman wrote a report the future of healthcare in Canada, because we've got a we've got a universal healthcare system. And he said in that report, Canada's healthcare system is not sustainable without the work of family caregivers. And so in 2010 the Canadian government actually recognized family caregivers in that, in the national caregiver day, you know. But really, you know, as Amy is going to tell you, and I'm going to say too, we need much more than just a day and recognition, because caregiving happens every day, and we need to build a better systems to support family caregivers. You know, we need a national caregiving strategy, a provincial caregiving strategy, all of these kinds of things, and we can make people aware of that on Caregiver day in Alberta, the health care system last year and this year actually recognized caregivers and made a big deal about it. And you know within the healthcare system, that's a huge win. I

Zack Demopoulos:

love that. Sharon again, Happy National caregiver day to each of you in advance, from Selma and I, but also Sharon, I can see why the word advocate is right next to caregiver for your title. You're You're an incredible advocate, just I could hear your passion behind it. So thank you so much for that. Krista, your thoughts?

Christa Haanstra:

Yeah, so I've been working in the caregiver space for many years, and when I was working at the Change Foundation, the caregiver day was sort of something that some people celebrated, but it wasn't nearly as big as it is now. So to see the growth of it year over year is really exciting. It's an opportunity for people across the country to be talking about these issues advocating. I can think of when I was at the Change Foundation that, for example, the City of Toronto had had us come to council and talk about caregiving issues. And so there's just this opportunity to kind of organize around one day, whether it's on Parliament Hill or whether it's at Queen's Park. Work, or whether it's at city councils. And the thing for me that's always the most exciting, which anyone who knows me well knows that this is the opportunity for those of us with lived experience to share that, to add that nuanced understanding of what caregiving looks like, because it looks very different for everybody, not no two caregiver experiences are the same, and it allows us to show that nuanced experience of caregivers that adds to all the data that we like to rhyme off all the time, because this is real, and there are many of us across this country propping up the healthcare system each and every day as we care for people at home or in their own homes. I

Zack Demopoulos:

love that, the lived experience term. I really like that. But I have to steal that from you, that that actually really is very important as we tell our caregiver journeys. And the whole reason for doing that, and I maybe just one quick follow up question, just maybe one of you can answer because again, we'd like to think some someone, I like to think that we're a global podcast, so for our Canadians are listening in, at least my relatives in Canada are listening in. Could you suggest one or two things that somebody could do on this day, if they're not a caregiver,

Christa Haanstra:

drop off some food to someone who is a caregiver. Don't ask them what they need. Just show up with something or, you know, it's that. Don't ask them to add another thing on their list of things to do, to think about, because it's already way too long. Or show up with, you know, fresh eggs, which might be controversial right now given the cost of eggs. Yeah, exactly. I have some coffee, even

Amy Coupal:

a cup of coffee.

Christa Haanstra:

Absolutely. That's great. Love

Zack Demopoulos:

that you have that. Yeah, sometimes, you know, folks don't know what to say and or do, and therefore they don't do it at all. So maybe we can encourage our listeners, from what you guys shared, don't, don't ask what they need, just, just do something. What's up? What are they going to say? No, I don't like it. I mean, well, they'll tell you that when they close the door, but at least they'll think, Wow, that was very nice, very appreciative. So, all right, thank you guys. We're going to our first first question.

Selma Archer:

Well, in keeping with the theme of honoring the hard work that all of you are involved with around caregiving. Krista, could you talk a little bit about it? I know that about two or three weeks ago, your national strategy for caregiving was adopted. Could you talk a little about that? Because we've been struggling trying to get our legislation through here in the in the States, and so far, we have not gotten that door to open. So could you share a little bit about that with us?

Christa Haanstra:

Absolutely So as I mentioned earlier, I have the privilege of leading the working caregivers project at the Canadian Center for caregiving excellence. But that organization, which is only in its infancy, still has only been around since 2022 just launched its national caregiving strategy, and the Canadian Center for caregiving Excellence, which is a program of the Israeli Foundation, went across the country and really consulted with caregivers and care providers. That's an important distinction in the work that they do, is that they also advocate for care providers, PSWs, personal support workers. And so they went across the country to figure out what needed to happen here in Canada, and they created this national strategy, which they launched a couple of weeks ago, and it's really about what I love about it, because it's true to my Dutch heart, it's very practical. It's not a very sort of high, high level, not understandable strategy. It's very practical. Offers very practical solutions. And of course, the solution, or the focus that I'm most enamored with is the one around work and care and how to support working caregivers. So there's lots of very practical solutions, policy solutions. So just to be clear, this is a national strategy, and it's kind of an advocacy platform for the Canadian Center for caregiving excellence in order to inspire the government to adopt some of what they're asking for. So we're still on that journey of getting it fully adopted.

Selma Archer:

Great. That's That's great. Katie McDonald was here with us recently, who works with you all, and she talked a little bit about the national Paid Family Leave Act for for caregiving that you you have in Canada, and another area where we have not yet been able to to get successfully accomplished that that that one, that hurdle. But can you talk a little bit about that? What's

Christa Haanstra:

interesting is when you're when you live here, and you know about this act, and we know how few people actually take advantage of it, because it's got a very specific requirement, so not very many people are eligible for it, and yet we should still be very grateful that it exists, because it obviously doesn't exist everywhere. It really is a leave related to if someone is at end of life, you can get a paid leave from work in order to support them. And that there are other programs. And I know Sharon, you were. Talking about some and maybe you want to share some information about other programs, but at the federal level, the caregiving benefit is really related to allowing people to take time away if they are caring for someone who's at end of life.

Sharon Anderson:

Yeah, it's actually a it's a really good program, because, you know, end of life caring is some of the most intensive caring you can do, and you can get up to 26 weeks of paid care to have to care give through our employment insurance program. So it's a federal program, the same as you get maternity leave here for a year, you can get that 26 weeks of of paid employment insurance, and it's a real benefit. However, you know it has to be, you know that death has to be foreseeable. A family doctor or palliative care physician has to sign those those forms. And there are some other caregiver benefits as well. But like many of the things that are happening in the US, they're also tax credits. And so they benefit the high income earners rather than the low income earners. And often times in Canada, they go on the care receivers income and not the caregiver, who are often women who may not have older women may not have worked. And so, you know, they should qualify for that tax credit if it was a, if it was a refundable tax credit, but it's not. So there's some things, and they are in, you know, the National caregiver strategy. They, they, there's been lots of foresight put into those kinds of things that will make because about 50% of caregivers are actually stressed financially. And that's one of the things that you know every Amy will talk about too, is that financial stress that caregivers are experiencing.

Selma Archer:

Well, like you said, is it sounds like it's a very specific group of people that fall into the situation to be able to take advantage of but at the same time, is a huge step forward. So and this work, we know we have to chip away, chip, chip, chip away, you know, a little bit at a time. So kudos to you guys on that one. It's

Sharon Anderson:

a whole change in mindsets, in culture. You know, generally we see caregiving. It's been women's work, women families are just as supposed to do it. So it's invisible work. So, yeah, changing those mindsets little bit by little bit. We'd like some bigger increments, please,

Selma Archer:

yes. Thank you for that. Another question regarding the round table, that was an excellent study. I wonder if you could share with us just some of your insights in terms of your key findings and key recommendations. Sure we

Christa Haanstra:

started the working caregiver project a couple of years ago by kind of doing a really full scan of what's happening across our own country, and then looking at other jurisdictions and talking to all the different stakeholders that are involved in working caregiver, you know, looking looking at the government policies we just talked about, looking at employers, talking to both HR people as well as CEOs as well as of course, those people with lived experience and kind of looked across the spectrum of employment as well. Because obviously, when we look at some of these benefits for working caregivers, you have to be employed in sort of traditional employment in order to be able to benefit from it or take advantage of it. So we looked across the board, and one of the things that we recognized is that employee resource groups is one approach that care that employers are looking at to support caregivers in the workplace. And so we wanted to bring together a group of people who are either have employees resource groups, or have some kind of policies around supporting working caregivers are thinking about it, or someone who's even wanting to start to build the business case within their own organization. So we did that at the end of last year, and we heard similarly to some of the stuff we heard in our environmental scan and survey, we heard some of the same kinds of things, but really what Sharon just talked about, it's a cultural thing across the organization, recognizing that you have working caregivers. One of the things that we found very interesting is, I talked to a couple of organizations where their employees skew younger. Oh, this isn't an issue for us. I said, think again, there are many caregivers who are younger. We assume that it's only the people who are caring for their aging parents, but in fact, we know that caregivers span all age ranges. We know that in general, 35% of the working employed people are caregivers, or if you want to look at the other way around, of the eight. 8 million caregivers in Canada, 62% of them are still working. So there's, no matter where you look, they're definitely working caregivers, and no matter what place of employment you are. So we know that it's really a big kind of cultural thing. So what we would what we found was people wanted to dismiss this as bit as an HR issue. And yes, HR has a very key role in making sure that employees are supported, but it has to be there. Has to be buy in at the senior level, otherwise it's not going to be implemented. And so we did find organizations that actually did embrace this. So we saw se health, which is a home care, home and community care organization here in Canada, and they are really looking at double duty caregivers, which means those are people who are working in the caring space in the daytime for their paid employment and then going home and caring. So that's even a more specific kind of caregiver and working caregiver, and they're doing things like helping them navigate the system and helping them find resources, and providing them with counseling and peer support and finding them centralizing resources so that they have they can find what they need more easily. And then we looked at one really interesting employer on the West Coast who has this sort of no regrets, career policy, which I thought was so interesting. And so in addition to their annual evaluation each year, performance evaluation, part of that discussion is like, what's going on in your life and what is it that we can support you with? And of course, you know, for some people, it's like, okay, I'm on a sabbatical in five years to travel the world, which sounds very glorious at the moment. But you know, for other people, it's like, Listen, my mom has just been hospitalized, and I'm going to need some flexibility around working, because I'm going to have to be back and forth to appointments, etc, etc. So it was a very interesting approach to thinking about how to incorporate family caregivers and how to support them at work. And all of this kind of came down to this idea. It was kind of based on this idea of employee resource groups, which is, how do you create support networks within your organization to support working caregivers, in addition to all of those policies that are going to support people, like flexible work and time off or going to part time without losing your seniority, all of those kinds of things that we've talked about at that session. And of course, we we brought in people with lived experience, so that when it got really interesting and rich is when the HR people in particular could ask some of the lived experience people, what they what made the biggest difference for them, and really being able to hear from them directly. And I think again, it goes back to this idea of creating an environment where you can talk about your responsibilities outside of work and feel supported in that, because many people said, I've seen other people talk about their responsibilities and then they get demoted, or they they're overlooked for a promotion, or they're, at worst, let go. And so you know, you have to create a culture in which people can talk openly about that, because it's not just a benefit to the employer, it's a benefit to society as a whole, because we're propping up the rest of the healthcare system to make sure that our family members are taken care of in between all those formal interactions with the healthcare system. So

Selma Archer:

yeah, just just quickly, one step forward, and you talk about creating that open environment in the report you you've mentioned that you have to have senior leaders on board with it, and they have to be kind of taking the charge to create that environment so people feel comfortable having those discussions. Do you have any tips for any senior employer leaders that might be listening or watching today that could help them start those discussions, or create an empowerment where people feel comfortable coming forward and having those discussions.

Christa Haanstra:

For sure, it's not going to surprise anyone who knows me that I'm going to say some kind of storytelling is going to help this, because at the end of the day, it's not first of all when a senior leader actually discloses that they themselves are a caregiver and how they balanced it, which is some of the people that we talk to, that's really powerful. But then, in addition to that, really bringing forward the stories of how they can be supported at work again and again and again, because we've already talked about this, I think Zach, you mentioned it earlier, but people don't self identify as caregivers until they're caregivers, and often they don't self identify until they're already at burnout. So you know, they're not Googling, what do I do as a family caregiver? They're googling my dad is sick and I don't know how to support him anymore. Or, you know, my mom is dying and I can't balance work like they're not writing the word caregiver when they're thinking about it. And so even if you're promoting it on an annual basis or on a regular basis, unless you're a caregiver, you're not paying attention to that in the same way as when it's actually relevant to you. So to me, one of the biggest thing is to be able to actually showcase some of the supports that exist and talk about the personal impact. Of that. And unfortunately, what we saw, I can think of one example in our environmental scan, where we spoke to a senior leader who had, he himself, had been a family caregiver and really understood it, and he championed it at a very large, national, multinational organization. And then he left, and the people who picked up the pieces weren't caregivers, and didn't have the same kind of passion, and it kind of fizzled out. It still existed, but people didn't have the same degree of knowledge about what was there. You know, it really is, unfortunately, the sort of championing role at the senior level that makes such a big difference. And then I think our big job is to figure out, how do you embed that into the culture so that when that person leaves, it doesn't all fall apart? That's

Zack Demopoulos:

awesome. That's great. In fact, Selma and I did a webinar for an organization, an 8000 employee organization, last December, and we had the C suite leader, who was a caregiver, facilitate the discussion, and when he got to the part where he shared his story, and then we continued with the rest of the presentation, you could just look at the chat room blow up. So there's a lot to be said with what you were sharing. Krista about having senior leaders if you're comfortable, to share your caregiver journey. It's amazing how the impact that that will have that's awesome. And not

Selma Archer:

only just on the employees, but But after that, senior leader shared his caregiver story, we had senior leaders calling in and taking part in the chat. So it's on the senior leader level as well that they felt comfortable that one of their colleagues came forward and talked about their story and their journey. So it's very impactful. A

Zack Demopoulos:

lot to be said about that, so let's, let's go over to Dr Anderson, who's given us permission to call her Sharon. So Selma and I are thrilled about universities and their roles in the caregiving space we had recently Dr Donna Benton from the University of Southern California Family Caregiver center in Episode 13. We'll put the link into the show notes for that. But Sharon, you've been really involved with the University of Alberta. Tell us a little bit about why that is and why is the University of Alberta involved in all this.

Sharon Anderson:

Actually, it was four family or family doctors, geriatricians in Alberta who noticed that their caregivers in back in 2014 were getting more distressed. So they were all caring for people with neurology. And was a neurologist, a gerontologist, Doctor Jana Hollywood, Duke, Dr Jasmine Palmer, who is a care of the elderly doctor and and so they they we started with a series of symposiums to say, what, what do family caregivers need? And they actually stuck when they started, thought that it would be just some support that would be enough. And the family caregivers kept on saying, the worst experiences we have are in health care. We need support from health care providers that that's what brings us to this thing, and often times we're not included as partners. We're asked to do things. And Doctor Parmar said that was a real revelation when in 2017 a family caregiver stood up and said, Doctor parmark, you are not listening to us stop trying to build a better caregiver and telling us to that we need education. What we need is healthcare providers to tell us what we need to do to work with us. And at that point, she said she also realized that what she was asking caregivers to do was carry out the care plan, but she wasn't asking them about their well being and their health. And from there, in 2017 it was like, okay, so what are the competencies healthcare providers, social care providers, community care providers, what competencies do they need to support family caregivers. So the caregiver center competency framework was started, recognizing, communicating, partnering, assessing family caregivers needs from their perspective, helping them to navigate the system. And the last one, is changing that culture and context of care, because that having health care providers in a patient focused system to support family caregivers partner with them is a real shift.

Zack Demopoulos:

Wow. You reminded me of when I was getting my palms stitched up by an emergency room physician, and she was asking me what I did for a living, and when I was telling her about my consulting work, she went into her caregiver story and her bedside manner completely changed. It was just amazing how all of a sudden and we talked about, you know, can you do more for your patients? But she said, we don't have the skill sets, we don't have the education. So hats off that you're doing that for healthcare providers. Yeah.

Sharon Anderson:

So what happens is the caregiver care.ca free, online for all care providers. Anywhere in the world. In Alberta, we're actually, we've gotten funding from the Alberta government to embed caregiver centered care, education and practices into 40 continuing care settings. And when we're talking, when Chris is talking about double duty caregivers, certainly one site has found that most of their their care providers are family caregivers. About 62% of family caregivers are working, but 72% of family caregivers in healthcare professions, in healthcare settings may be those double duty caregivers, and so what they've noticed is, as they started to talk about caregiving, provide some of this education, what they're finding is less absenteeism from their employees. Employees are happier. They're actually coming to management and actually talking to management about their caregiving and the kinds of things they need. And what we what we want is we want the education. We want caregivers supported, caregivers to feel better, and we're measuring that. We want providers to feel that joy that they're actually supporting caregivers, and we think it's going to benefit the health care system as well. Hats

Zack Demopoulos:

off to you. I hope we take a page out of your book. Because Can you imagine a caregiver going with their parent, let's just say, or their spouse to the doctor's visit, and the doctor turns to them and go, you look tired. Is everything okay, you know? And then start talking about their caregiver role and maybe what they need support in gosh, the amazing wow. One more group in our caregiver advocate army. I love it. Someone I read your report the hidden workforce, optimizing support for family caregivers at the University of Alberta, came out with that's fantastic, especially the word hidden. Since invisible employees is is, is a term that is very dear to us. Can What do you think are the key takeaways from that? Because I know you talk about burnout, which is really important, also your your call to action that family caregivers need both work cultures and care teams to support them, but you pick, what do you think is the main, main theme that we should walk away with from your report?

Sharon Anderson:

Okay, so, Amy, you know, I read the same report. It was from the Dalai Lama School of Public Health in Toronto, and we were just, I was shocked at the rate of chronic disease, and also, we've got this older population. So the question is, is, what? How are we going to care for them? Because we've got this workforce shortage, we've got a caregiver. You know, fewer caregivers. Families are smaller. Both people are working oftentimes. So you've got working caregivers less time, sandwich, generation caregivers, all of those things that are going on. So what do we do about this hidden workforce? How do we how do we start to talk about this and make it, make it possible. So it really is about the things we're doing, you know, identifying caregivers, supporting them, recognizing them, communicating, supporting them, and all of those kinds of things. And you know that we need to support double duty caregivers. It's this is a conversation we need to have. We need to bring everybody out of the closet.

Zack Demopoulos:

I love it. Thank you. And the more stories we tell, the more reports you write, the more senior leaders that chat up, we will bring everybody out of the closet. I don't know if that's the best term to use, but we will

Christa Haanstra:

out of the shadows. We used to say out of the shadows.

Selma Archer:

Yeah, well, one of the things that we've learned in terms of supporting caregivers from an employer perspective is bringing them what they need as opposed to what they we think they might need. So actually discussing with them what their needs are, because many times, employers implement programs that are very much under utilized or not utilized, and that's because that's not what the employee, the working caregiver, needs. And one of the things that stood out for me, Amy in your spotlight report from Ontario, you have an attic at a glance, sheet that has some amazing statistics from the perspective of the working caregiver, of what they need, and you know they're talking about their burnout, their stress, they're needing support from their employer, and what that might look like. So could you talk a little bit about that piece in terms of one of the things that really jumped out for me is that not only is are they distressed and most of them overwhelmed at this point, but it's getting

Amy Coupal:

worse. Yeah, so, so there's a few key things. Things that came out of our spotlight report that that tie into what you're talking about. One is that we see that caregiver burnout rate going out up each year, and that's something that everybody should be paying attention to, because if caregivers become burnt out and they reach their breaking point and they can't keep going, then the people that they care for are going to face some challenges, and you're going to have two people, the caregiver who is burnt out themselves, and the person they care for, who may not be able to continue to live where they live, or access the care the way that they do right now, etc. So caregiver burnout is a significant issue, and we see that caregivers are also getting to burn out faster. We used to see caregivers getting to burn out after about five years. Now we see it after two so we understand some things about why that is. One is that they may be facing increasing challenges to access the care that they need. So there may be more paramedical or administrative or day to day kind of tasks that people are doing that's definitely a factor. We know that the financial strain on caregivers is also going up. Zach, I think you alluded to this earlier. You know, many caregivers are paying out of pocket for medical supplies, home care, the cost of daily living for for the person that they care for, and so this is an additional stressor for caregivers that's asking them to take on more. It's not just time, it's also financial. And as we've been talking about quite a bit today, many people, the vast majority of caregivers, are balancing work and care in some way or facing those challenges of I don't think I can continue to work and provide the care that I want to provide. But there's another element to this, and it ties into what you were talking about with Sharon. You know, we're hearing from our health system partners more and more about the changes in demographics in our province, and likely the same where where you live as well, right where we're going to have a larger population of older adults, but also these increased incidence of chronic disease across the population. And so we started asking ourselves, Well, what does that mean for caregivers? So in our spotlight report this year, we started to ask questions of people who weren't caregivers now, but expect to be caregivers in the next five years. And we gained so much information that we actually issued a separate report about that this year, and it was quite striking. So we have 4 million caregivers in the province of Ontario now. We would expect by 2030 that that number will reach six and a half million, and those people will be supporting older adults as well as individuals, you know, navigating circumstances related to chronic disease. Those people are expecting things from their employers. They're expecting a caregiver friendly workplace. They're expecting a manager who is prepared to have these types of conversations? They're they're expecting the health care system and also things like employment insurance and all of those kinds of things to be there to support them. And so it really means we have to have some critical conversations about, wow, we have a lot of caregivers struggling with burnout now, and a lot more caregivers coming. So how do we as organizations that support caregivers, as healthcare providers who interact with caregivers, you know, as a society, plan for and bring it out of the shadows, for for more caregiving to be normalized in our society and and I think that, you know, we've hit on some of the themes that we've been working on with this, identifying caregivers early and often in the healthcare setting, including them as a part of the care team, and then connecting them with the support that they need for them as a caregiver, not just for the person they're caring for, but saying, Hey, you're a caregiver. You need things too.

Unknown:

Wow. All of those amazing looking

Zack Demopoulos:

forward to that report. That's that's a great question. As somebody who doesn't even do caregiving today, what they think they'll that's Look, When's that going to be coming out? Well, so

Amy Coupal:

we can share that report with you, and you can include that in the links. We also have on our website, lots of free resources at Ontario caregiver.ca But one of the things we created to go with that report was a quick tip sheet of if you see parents, in laws, aunts, uncles, neighbors, members of your faith based community, whatever it might be, who are getting older and you think, Hey, I'm this might be part of my life. What are the top five things that you can think about now to get ready. So I can share that with you too, because people say and we heard this in in the data that we gathered. I know it's important to get ready, but I'm either uncomfortable about having the conversation or I don't know what to do. And so we want to simplify that and demystify that. Because the sooner people can connect with the support that they need, the better I

Selma Archer:

might need to say. And you know what? That's excellent, because you're looking forward and you're not waiting for them to have that phone call that makes them a caregiver or to be, you know, in the middle of the the situation before they're ready. So that's a powerful position. So that's great. I'll be looking forward to reading that report.

Christa Haanstra:

We talk about advanced care planning, or advanced healthcare directives, for when you get sick. I want to throw the idea that we need to create an advanced caregiving plan, which is exactly what you're talking about. Amy like, what? How do we think about in advance, what that caregiving is going to look like? Because I always joke about the fact that I talk to my siblings like, Oh, what if mom dies first? What if dad dies first? Like, you know, kind of in this light hearted way, we would talk about what that would none of us talked about what happens if my dad gets sick like he did, and we have to care for him for 10 years, yeah, and still going. We didn't talk about the process of what would what would get them to death. We just said, what if they died first? So we think about that, but we don't think about this journey that gets us to there. So this idea of an advanced caregiving plan where you actually have those conversations would be so profound.

Amy Coupal:

And I think Christ has hit on such an important point. You know, we make assumptions my mother was much younger than my father and ended up with, you know, a cancer diagnosis and a palliative care journey that left our family assumptions in the dust. Right, just like Krista and so many people have this experience, whether Selma, it's to your point, the phone call in the middle of the night, or life just goes a different direction over time. And so this is why some of those basics about you know, what are your preferences and your priorities? Do we have documentation? Do you have documentation in place? Do we know who's in the circle of care. I mean, Chris is talking to her siblings, because there's an underlying assumption there that this group is somehow part of the circle of care. So if you're thinking about those people in your life, do you know who that might be? And different people may make play different roles. Maybe there's a next door neighbor who wants to shovel the snow. That's a relevant thing in Canada, right? So you know, there's lots of different roles for people to play in a circle of care and understanding some of those things and some of the variables can be so helpful, yeah.

Sharon Anderson:

And to add to that, too, my husband was 46 he was a competitive swimmer, Master swimmer, rode his bike back and forth to work to about 45 minutes each way. So fit, healthy, at least we thought. And then he had a stroke. And so here you are. Kids are 11 and 16, and you know, how do you? How do you deal with that? So, yeah, caregiving. You never know when caregiving is going to hit you.

Zack Demopoulos:

Wow. I mean, it's a difficult conversation to have. I mean, most people don't worry about fire insurance until they've had a fire or and then it's too late, right?

Sharon Anderson:

But they're in Canada in the in the next 10 years, one in two people will be family caregivers, just because of the demographics that we're looking at we're in that hidden workforce report that we're in the Amy's Ontario spotlight report on, on, on the demographics, the fact that families are smaller, there's fewer caregivers, you know, so, so there's lots of work to be done, as far as you know, asset based community development, where we support each other in our communities. On national caregiver strategies, on provincial caregiver strategies. You know, where we're building that better system, changing that those mindsets upon how we deal with working caregivers and double duty caregivers, because that's a that's a population that most health systems are not looking at at all.

Zack Demopoulos:

Great conversations, guys, and I wish I would have had those difficult conversations with my siblings and my parents. Of course, they're Greek immigrants, very proud, very stubborn, and there's no way they would have these conversations with me. But speaking of Greek immigrant parents, I'm going tomorrow morning to my mother, who's in North Carolina, I get on a plane and I'll spend three full days with her in the nursing home, because I'm her long distance caregiver. And I have learned a lot of lessons from the first time around when I was doing it for my father. But one thing I want to share with you guys and get your reaction to is I tell everyone I just did it now, I tell everybody that I am a long distance caregiver for my mother. I'll be gone for the next three days doing this my first go round. I was working for a large organization someone I knew each other for like, eight years. We worked together. We never knew each other's caregiver story. Only 10 years after we left did we even share the story with each other, and that's why we're doing. The work we're doing together today. But I didn't tell anybody when my father had a stroke. You know, in three minutes, I was involuntarily drafted to become a caregiver, and I went back and forth to North Carolina every month, and I never told anybody where I was going, what I was doing. I felt like there was a little bit of a stigma to it and and that there might be some negative consequences for it, and we all know that. We read about it in our reports. We hear about that in stories. One thing I some and I are kind of encouraged by some of the things that we're reading from your reports and your conversations is that Canada is trying to take the caregiver role and make it a work force strength, try to battle the stigma, and hopefully we'll bring folks out of the shadows. I like that term better we're out of the closet, or we're going to make them more visible. So Can each of you just share with us a little bit about what can some of our listeners who are employers, HR, managers, working caregivers. What can we do to make caregiving workforce strength? I'm

Christa Haanstra:

happy to jump in and start just in terms of the the work that we're doing. I am very, very passionate about this, because when I talk about working caregivers, and people look at me like, oh, another group of people who need some kind of help or support, and I think, no, no, no, no. First of all, it's a two way street, because people who are caregivers. Typically, the caregiving falls to people who can actually handle all of the caregiving. And not only that, they gain the skills, so many skills, that workforces are looking for right now. They navigate complex systems. They advocate for their loved one. They are project managing, financial managing. They are multitasking like nobody's business. They're learning new information. They're pretty much having to learn, you know, healthcare systems and information about different diseases, and it is the kinds of things that you want in your workplace, not only that, they have the a lot of empathy, because once you go through this, you see you see around you, you see the signs of who else is going through this or going through something else that's similar. And so you know, when you think about the skills that they bring back to the workplace, we got to embrace that and not look at it as a negative and really talk about how we really take advantage of that, and take advantage, not in a bad way, but really benefit from what working caregivers can bring to the workforce while they're caregiving and after their caregiving responsibilities are over, and not think about it as this need to accommodate, but rather really Embrace what caregivers can bring to the workforce. And I think there's so much. When you look at what Gen Z and Gen alpha are looking for in terms of their careers, it is all the same things that working caregivers need, flexibility, ability to go part time, some kind of work life balance. All the things that we talk about is what they're looking for. So workplaces are going to have to start to look at this anyway, because those are the people who are coming into the workforce. So why not do it now and benefit us

Zack Demopoulos:

all? And that's a large percentage of the workforce. If you're going to include Gen Z and Gen, what was it alpha? Gen, alpha in there too. I mean, didn't you guys share a statistic? Was it 63 what percent of the workforce are caregivers?

Christa Haanstra:

35% and 62% of caregivers are still in the workforce? Yeah.

Zack Demopoulos:

So that's a huge population. It's worth spending some time with. Yeah, exactly.

Amy Coupal:

I can build on Chris' comments. We've got resources for both employers and working caregivers on our website at Ontario caregiver.ca You know, helping people to talk to their employers about their their caregiving circumstances, but also for employers to think about, you know, what would it look like to have caregiver friendly policies, to be a caregiver friendly workplace? So that's a great place to start. The framing that I would use with people just building on what Krista said is this is a recruitment and retention advantage. If you look at how many caregivers we have in Canada now, but how many more we'll have in the future. And surely the trends are not that different elsewhere in the US or around the world. People are going to want to know, how can I work and continue my caregiving commitments? And so if we can be open about this, if we can look at what makes sense in individual workplaces, because this isn't a one size fits all type of situation, then we can really provide this as a competitive advantage for getting the best talent in our different workplaces. So that's a whole different way of looking at it, but I think it's a fair and reasonable way to do so.

Sharon Anderson:

And building on this, I'm going to talk about a transplant. Caregivers are just the intensity of caregiving when somebody has a transplant, a heart transplant, lung transplant, liver transplant, is just a month of you care, 24 hours a day, seven days a week, you need to be. Her and this caregiver talked about her employer, how they gave her time off so that she could do that made sure husband was fine after the transplant. And then she talked about how she was willing to fill in do anything, because how that employer had helped her over so over the next 20 years, because she's just retired, that giving giving back to her employer for the bit that he did for her. Wow,

Zack Demopoulos:

yeah, wow. I just can't end this way. You guys have been fantastic. You're great career gears, great. You're great caregiver advocates and so some I'm gonna throw a bonus question in here for each of you. We'll end on this great note here, and this will also help continue our global caregiver advocacy series as proud Canadian caregiver advocates, each of you, I want you to think about one thing that you hope to see accomplished in the next 12 months in your country,

Sharon Anderson:

I'll start every caregiver who sees a healthcare provider gets asked, how are you and what do you need? I

Unknown:

love it. Wow. I'd hate to go after sharing. Go ahead.

Amy Coupal:

I'll go after Sharon, because I'm going to build on that. I think part of that is the caregiver identification piece, which we know we are still Closing the Gap recognizing that person as a caregiver, so that when they go into all of their subsequent interactions with that healthcare provider and everybody else that they know, oh, I'm a caregiver, and, you know, here's my moon shot in the next 12 months, that they're really included as a part of the care team with information that's being gathered, decisions that are being made. But in particular for transition plans, it's so important that caregivers are included, because they're expected to implement but they need to be a part of that planning.

Zack Demopoulos:

Yeah, that's excellent. Thank you. Krista, I hate to make it last, but why don't you close this up here?

Christa Haanstra:

Okay, well, I on the on the caregiver benefit front, we now have a non refundable tax credit, and we would really like to see that to be a refundable tax credit. So that's actually doable in the next 12 months. But overall, on the grand scheme of working caregivers, it would be great to get to a point where, when we're talking to employers, they intuitively know what we're talking about, what a working caregiver is, because that's still not the case. And then secondly, that people are talking more openly about being a caregiver and getting the supports they need in the workplace. Maybe

Zack Demopoulos:

we'll do a reunion in 12 months and see how we're doing with those visions. Yeah, right. So many closing comments,

Selma Archer:

just that it's been fantastic meeting all of you and having an opportunity to chat with you about the great work that you're doing, and we can certainly take some pages from your from your stories, and from the work that you're doing going forward, when we look forward, Zach and I hopefully will be able to continue to partner with you and build some alliances and work together, because, as we've said, caregiving is is a Worldwide challenge. It's not just, you know, an isolated issue. We're all either have have experienced it or we're going to experience it

Zack Demopoulos:

so and I'd just like to add, as someone whose roots are in Canada, and I have many relatives, shout out to my sister Bessie in Canada, I want to thank each of you for the work that you're doing, the advocacy as caregiver advocates, I just thank you on behalf of them that we do need to help shine a light on our on our caregivers, who are sometimes feeling alone and invisible and at the end of their rope. So thank you so much for taking this valuable time to be with us, and let's say someone, let's do a reunion in 12 months. Put it on our calendar. Hey,

Unknown:

sounds good to me.

Zack Demopoulos:

Thank you everybody. And Happy National caregiver Day to you. Thanks

Christa Haanstra:

for having us. Thank you.

Unknown:

Thank you for tuning in. Be sure to catch new episodes of working caregivers, the invisible employees podcast every other Tuesday, please also visit our website, invisible employee advocates.com to subscribe to our newsletter, purchase our book and learn more about how we can help you strengthen your workplace to become more supportive of working caregivers you.