The Hidden Disease 40% Of Americans Are Living - Alexandra Drane

[00:00:00] Over the course of literally gathering over a billion data points, we came to this conclusion that we have to broaden the definition of health to include life, because when life goes wrong, health goes wrong. And we literally use that data to coalesce around what we call the unmentionables, which was this notion of caregiver stress, financial stress, relationship stress, and workplace stress, that these were in fact the biggest diseases in the US.

[00:00:25] This is Inspiring Women, and I'm Laurie McGraw. And today we're speaking with Alexandra Drane. And Alexandra, you are your own force field of energy. We're going to talk about that, but we're going to talk about specifically caregiving, unpaid caregiving. You are the co-founder and CEO of Arc Angels. That is an organization that lifts up this concept of caregiving, why it must be recognized. You've got scales, you've got reasons, you've got science to actually back up your life.

[00:00:53] And I want to talk about why this is so important. Thank you for being on Inspiring Women. You are an inspiring woman. I would literally drop anything anywhere you told me to go. Well, thank you. Thank you. Thank you. Let's dive in. You know all sides of this equation, but you have been talking about unpaid caregiving for quite some time. What is it? Why is it important? So unpaid caregiving is all those things we do as we care for someone else. So anyone who's caring for a family member, a friend, or a neighbor, in a whole range of caregiving,

[00:01:23] is a range of tasks. I think people in their mind visualize, oh, if my mom with Alzheimer's moved in, then I'm a caregiver. But they don't see all these other roles that can go into it. One of my favorite examples is actually between 40 to 50% of caregivers are men, which is a shocking statistic. For most folks, we publish that so I can stand by it. But the jobs they're doing might look different, right? So maybe the gentleman is the man, this is horribly stereotypical,

[00:01:51] but you roll with me for a second, is putting in bars so that a shower can be safe. Maybe they are handling finances. Maybe they are negotiating, you know, with benefits or how to actually get somebody from here to there. Whenever I give a talk, and it's often, it's a room full of often primarily men, I will get attacked after with guys who will say, oh my God, I never thought of myself as a caregiver.

[00:02:16] And yet while you were giving the talk and giving examples of men, I was answering a text from my sister who was asking why I wasn't taking mom to the doctor, or I was paying my dad's bills. So it's prevalent across all these different populations that we don't typically think of when we think of what an unpaid caregiver is. Why did this become an important cause for you? Like, where did the voice for this? I mean, you are a serial entrepreneur. You've run many companies. You've started many companies. You've sold them.

[00:02:42] But this has become your signature issue where you have, and Alexander, we've met over years. And like, you know, conversation one started by like, are you an unpaid caregiver? Are you? It's like, it's immediate and it is a consistency in terms of what you bring to any conversation. You're relentless in terms, and I was like, boy, she's crazy about this issue. I am insane. Rabid. Why? Why? Well, so my last company was called Eliza.

[00:03:09] And over the course of literally gathering over a billion data points, we came to this conclusion that we have to broaden the definition of health to include life, because when life goes wrong, health goes wrong. And we literally used that data to coalesce around what we call the unmentionables, which was this notion of caregiver stress, financial stress, relationship stress, and workplace stress, that these were in fact the biggest diseases in the U.S. And that if we wanted to have an impact, those were the things we had to address.

[00:03:35] Social determinants first, then the unmentionables, then people can vault to their highest order self and do things like preventive screenings or take care of their diabetes or whatever else it might be. In parallel, my sister-in-law was diagnosed with glioblastoma. She was 32. I have a niece who's now 24, who at the time was two and a half. My sister-in-law died seven months later, textbook case of overtreatment.

[00:03:57] In the craziness that went through about a year later, unpacking how horribly we did supporting her, even though we thought we were doing the best job we could, we realized we have to help people have the conversation about how to live their best days until they're last way before you're in that situation. And how can we make talking about your wishes and your legacy something you start doing when you're 18? When we left Eliza and after we had done Engage with Grace, we looked at the overlap of those two things.

[00:04:27] And it was the unpaid caregiver. If you are an unpaid caregiver, you will have financial stress, relationship stress, and workplace stress. If you are an unpaid caregiver, it's going to define everything about how you're living your life. So it's funny. We got to it through the data by continuing to peel and peel and peel. But once you start looking at the data, everybody has a story. But it started from a very big and personal experience. You've had more than one big personal experience. And I do want to say you didn't do a terrible, horrible job caring for your sister-in-law.

[00:04:57] I know that story because you've talked about that story. And one of the things that you did most importantly is you brought your sister-in-law home so that she could be with her daughter in the final moments. And the heart of that is one of the, I have to imagine, things that brings closure in an important life. So I know that story. I say that story with emotion. And so you didn't do a horrible job.

[00:05:25] You did a magnificent job advocating in the time that mattered the most. That is such enormous kindness. And you know what's interesting? I just had this discussion with someone today. At the time, I felt that because we weren't able to get her to talk about her wishes, that that was a failing on our part. Many, many years later, I'm able to look back and realize she was a pharmacist. She knew exactly what was going on. She did make a choice. She did not want to talk about it.

[00:05:50] And that's an important part of how we care for each other is to care in the way that somebody would feel cared for. And for her, it wasn't a discussion she wanted to have. And by the way, you're so gorgeous that you just cared for me that way. Thank you for watching that. Truly. Yes. Really appreciate that. These are big moments. These are big moments. And so let's talk about caregiving by the numbers. Okay. So over 40% of people in this country, I actually didn't know the statistics that of the large number that are men. And I think of it as more of a woman thing.

[00:06:19] We're at the WBL conference. So we're speaking to an audience of executive women who are out there. So let's just talk about the numbers. So over 40%, 43% of caregivers that are out there, you're giving them a voice. But you also talk about the levels of stress that they have, which leads to other health issues. This morning, you were talking about things as dire as suicidal thoughts.

[00:06:46] So can you just walk us through some of the statistics from what you've learned? Because you didn't know all those numbers when you started working on this issue. Yeah. Well, as you and I both know, often until you can put hardcore data behind it, an issue, people love a story. But I use this thing called emotion remorse, which is if you tell too many stories and an audience starts to feel too much, they're like, this must be weird. So that's when you hit them with data, data, data.

[00:07:09] And data is what gives a CFO or someone else in a position of power the ability to actually go and make some kind of change happen. So the data is pretty overwhelming. Over 40% of us are in this role. We use the word intensity. We don't use the word burden to really look at the impact this is having. At a high level, 70% of us will have at least one mental health impact when we are an unpaid caregiver.

[00:07:33] The thing that's interesting about this room, this conference at WBL, people who work in healthcare are also paid caregivers. And a disproportionate percent of paid caregivers are also the one doing it all for everyone else outside of work. So it's typically in a health system. Because they know, because they can navigate, because they can understand when actually it can be just as hard, if not harder. If not harder. And the kind of person who goes into healthcare is a carer, right? They're the person who's going to do it.

[00:08:00] And then what happens, the number of folks who've come up and told me the stories about how many other people they're caring for. When you're known as an expert in the space and to someone outside of your work, their lives are falling apart and they can't understand what's going on. They're going to call someone who they know knows this. They're going to call you. Yeah. Right? And so you end up taking care of all these other folks at the same time. And that can have a huge impact on your intensity. So at a high level, over 40% of us in the role, 23% of us are sandwich generation. Right.

[00:08:29] So we're caring for one or multiple under 18, one or multiple 18 or over at the same time, which can be wildly intense. Yeah. Let's talk about the intensity in that sandwich generation. And you talked about it as the panini generation, the club sandwich generation. The panini club sandwich generation. I mean, when you start thinking about the number of roles people, and it can really be a series of interlocking circles where I had a number of conversations with folks today where they're like, well, I myself am being cared for by my man because I have cancer.

[00:08:58] But meanwhile, I'm caring for a grandchild at the same time because there's a parent with substance use disorder. Right? You just see all of us caring for each other at different times. We talked about suicidal ideation, which I think is something that's really important to bring up because we're looking for measures that will gather people's attention. Before we even get to that though, Alexandra, you talked about the numbers of just sort of like caregivers in that stressful situation. Yeah. And pre-COVID, there was just that intensity.

[00:09:28] It was there, but for significantly fewer people. Oh, yeah. And the level of intensity was very low. Yeah. COVID happens. Yeah. That was a shock to the system for everyone and for caregivers. There are many new people in many new roles there. Can you just talk about what happened with the level of intensity pre and post-COVID? Yeah. It was a shocker. You know this when you, as a data-driven person, when you see your own data and you're like, this can't possibly be true.

[00:09:57] So we put people in the clear yellow or red. If you are in the red, you're in the red. You have an over 90% risk of mental health impact. You've got a 50% reduction in productivity and you're going to cost four times that of someone who's in the clear. So being in the red is like, you're really in the red. Before COVID, 8% of us were in the red. As of COVID, it tripled. And everyone who lived through that remembers, right, the dissolution of that care infrastructure, inflation, inability to get coverage.

[00:10:24] Maybe you get called into the office or you're not called into the office. Whatever it was, it just really magnified the intensity people were feeling. And I'll just point out, we use the word intensity with great intention. Because burden is often how people refer to that stress that someone feels. And that's a heartbreaking word for someone who's in it, right? Like my dad, he's not a burden to me. It's intensity of love and exhaustion. Effort, joy, fear, pain, right? Good, bad.

[00:10:52] Intensity lets you hold all those things in a strength-based and aspirational way. And brings some agency to an issue that is upon you. Yeah, absolutely, right? It's like you're a fierce archangel spreading your wings out over these people you're caring for. And that is intense. And intense shows strength. It also shows vulnerability. So as of COVID, it was at 24%. And then what we've seen since is it's never, ever, ever come back. And I think we all expected or hoped that it would. It didn't.

[00:11:20] It hovers between anywhere from 24% to 32%. Then you can look at people in the red. Then you can look at specific things that might be happening, like double duties. Paid caregiver who's an unpaid caregiver at the same time, that typically doubles intensity. The intensity at WBL today, 40% of folks are in the red. Only 2% in the clear, right? And then think again. What does it mean to be in the red? 90% mental health impact, 50% reduction in productivity. And we've got that, you know, four times the cost of someone in the clear. And stress.

[00:11:49] I mean, we know what stress does in terms of the physicality of it and, you know, all of the other issues that come with it. And you can just sort of like foresee the issues of more stress coming. You talk about that, you know, that sandwich generation of people with your children who might be needing to be with you longer because they're having different issues, you know, in their younger, younger careers.

[00:12:13] And then the parents, aging parents who are living longer, which is wonderful, but also in different circumstances. I'll give two extreme examples. So let's say you have a couple and they're both the child of divorced parents. Then you might have as many as eight people who are getting older that you're responsible for. I think in the olden days, we all saw, remember the charts we would look at? Yep. But nobody ever really believes that's going to happen or emotionalizes it.

[00:12:43] They intellectualize it until they're living it. We are living it. There are not enough people to go around to care for the level of intensity that is happening with people's health care. On top of that, over-treatment is a thing, right? The system does a really good job giving you every test, you know, in many ways sort of over-clinicalizing a situation. And we also talked today about the great transfer, the great wealth transfer that's coming.

[00:13:09] I'm just going to remind all of us, there's no great wealth transfer coming if we continue to be over-treating people all the way up until the end of care. We literally cannot afford it as a country. So we've got care costs that are expanding, clinical costs are expanding. Meanwhile, the impact and responsibility on those unpaid caregivers to do that means we're having to leave our jobs. I just heard a story today of a breast surgeon, sorry, a plastic surgeon who's a single child, has two parents who are getting on in age.

[00:13:39] She's a single practitioner, runs her own practice. She has to step out. She has to literally shut her practice down because she cannot do the work associated with caring for both of her parents while also going through this herself. So we see just this massive, massive, you know, cauldron of space, huge space between how many folks are going to need care and how many folks are available to do it. At the same time, I'll add kin care.

[00:14:04] You've got a lot of folks who are growing up with a mental health condition or there's a parent with a substance use disorder. We've got grandparents stepping in to be supporting. Yep. I've had a lot of conversations with folks today talking to me about, you know, I've been able to put in place trust because I have two children with a disability and I know when I'm gone, I've got to make sure that they're able to be taken care of. Well, that's gorgeous. That's because WBL has the kind of folks here that they do. That's not happening across the country. Right. There are a lot of situations.

[00:14:33] We've got this incredible intensity that's coming down on us. And unless we as a nation, unless we as employers, unless we as cities and states and municipalities start thinking seriously about what's our plan to care for all the people that we're going to have to in a way that doesn't make everyone not be able to show up at work. Well, you also have started to really put forward making it a thing. So caregiving as a profession, like taking that time off, which many people do need to do.

[00:15:00] And you've taken just putting words to what that means, badges to what that looks like. And you've also tried to address the stigma that comes with that. Sometimes shame of needing to do something, which puts someone in a weaker position to then go and reenter the workforce.

[00:15:20] So just talk about that, because I think that is a profound area in terms of impact that you're currently having in addition to all of this. But that, because so many people are facing the choice that they need to make, making it okay and not a, you can't go anywhere from there. You know, like now you're down and out. You're never coming back to the workforce. Yeah. You know, one of the things that we say all the time, it's not a gap. That wasn't a gap. That was a job. And let's be clear. We live in a care economy.

[00:15:50] These are the folks who know how to care. Anyone who's been an unpaid caregiver. They're basically a CPA, a therapist, a doctor, a nurse, a navigator, an innovator. The skills of the folks who get through this are exactly who we need to be hiring. And so we're trying, in everything we do, we're always trying to flip that script from like, oh, poor you, to no, you're a freaking badass. Good for you, right? Yeah, you were a caregiver. You were an archangel. You have earned the care badge. And the care badge is about basically doing two things.

[00:16:19] It's our partnership with Joint Commission. We love their bravery in doing this with us. It's first finding and supporting folks right when they are in the thick of it. Because we are sending people home to care for a loved one and having them do tasks that I'm for a chief nursing officer saying to me, when I did that for the first time, my hand shook. Right. And I was in nursing school and I'm sending home somebody to care for their loved one.

[00:16:46] And I'm expecting they're going to be able to do these tasks. Wound care, needles, you know, medication. Literally. Yeah. Things that we just couldn't ever even imagine. And these are folks who are not trained in it. And the personal investment in making sure things go well is so huge. So the first thing we're trying to do is to find those people who are right in the thick of it and make sure we're helping get them access to the skills training that is available.

[00:17:11] Then you've got another thing at the other end of this situation, which is unfortunately, in many situations, the person that you're caring for has passed. And when they have passed, first of all, there's a presumption that, you know, when my mom-in-law passed, I know there were a lot of people because it had been intense for a while or after Zah died, my sister-in-law. You could feel people chomping at the bit like, okay, Alex, it's over now. Let's go. Get back into work. Right. That is the hardest period. Yeah. You are grieving. The administrivia that the world throws at you. What if it goes into probate?

[00:17:40] How you're unwinding things? Just the details of someone's digital life, right, that you are now left. And oftentimes hoarding is something we're going to start talking about. People are walking into houses where they had no idea what was actually going on. Financial fraud and abuse. They thought there was money. There's no money. Yeah. Right. So all of these things are happening to this population. So after they've gone through all of that, you have an individual who is highly skilled. They have been through the wringer. They've done it with grace and fire and elegance. They have learned and learned and learned. Right.

[00:18:10] This is a boss of a human. They have more time available. Right. Because they quite possibly had to leave that job. And at the same time, they might be feeling a loss of purpose. Because even when it's really intense, it's still this identity that you get. And if you're good enough to tap into that purpose with anyone who's listening, please understand that even when you're in the thick of it and it feels overwhelming, what you're doing is beautiful. And if we can remind ourselves that, it's intense. It's hard AF.

[00:18:35] But if we can remind ourselves we're doing something of enormous value, it can help us get through it. So in the end, you've got this person with more time, incredible skill sets, and who's looking for a way to be of purpose again. Freaking hire that person. Yeah. Or give that person, welcome them right back if they had to take a leave and give them more responsibility. Let's talk about that purpose thing, because there are so many people, at least many of my friend circle are in a circumstance where aging parents are an aspect of what their life

[00:19:04] is about, regardless of their job, regardless if they're not working. But aging parents is a purpose that they have. And then that purpose does change during a time of grief and everything else. So what are the types of resources that you might supply at Archangels for those people who are in that circumstance? In the grieving? I mean, the beautiful thing about grieving, just the fact that we have death doulas now and we're talking about it.

[00:19:30] And there are companies that are doing beautiful, beautiful things specifically focused on grief. And I think there's a, again, there's this perspective that grief is something you go through very quickly and it's over. One of the most beautiful things I ever read about it, and this is what I see a lot of these organizations develop to do, and we try and get people to these services that can support them, was described as when the person that you love passes.

[00:19:54] You are for a while in the middle of an ocean and there are waves crashing over you and you cannot catch your breath. You literally can't catch your breath. And then slowly, slowly over some period of time, the waves begin to subside enough that you can breathe. But then out of nowhere, you're going to get absolutely taken out by a massive, massive rogue wave and you're right back into it. And then more time passes and more time passes. And those rogue waves are still going to come and get you.

[00:20:22] So you'll get to a place where the memory can be a blessing and you can remember so much of the beautiful stuff because often there's a lot of trauma that's happening in those last stages, especially in a nation that's still over treating our elders. But you'll at least be better. And then out of nowhere, it will feel you. You'll smell something. You'll hear a song. You know, the way that for me, it's a spring, the way the leaves pop. And you just get this overwhelming sense. And now there are ways and processes to help manage that grief. One of the most important is just to talk to someone else about it.

[00:20:51] That peer-to-peer thing we're understanding, which gets back to your other question. We have to not only de-stigmatize. It's not enough to de-stigmatize what it's like to be an unpaid caregiver, what grief and mourning are. We have to flip it all the way freaking over to the other side and celebrate it and say, these are our, and I'm not going to say heroes, although I do personally think they are, these are strong, extraordinarily capable humans who have been through it. With new skills. With new skills.

[00:21:19] With something that is not, was not just the, as you had, like, how do you identify a caregiver for somebody who says, I'm just. I'm just helping. I'm just a neighbor. Just a son or a God-fearing person. Yes, and actually what you're talking about is actually you are someone with new, profound, impactful skills in ways that is important for whatever else, professionally or not professionally, but contributing in ways.

[00:21:45] Alexandra, the last question I want to ask you on this Inspiring Women conversation is your energy and impact has always been there, but it's growing and it just seems to become more, I don't know, fervent, vibrant, name it, but you know, where does it come from and why does this remain something that you're only leaning into more and further? And how do you give that advice to others? Because I feel that so many people have amazing impact and you are just a living, breathing

[00:22:15] example of it every single day. That is so kind. Thank you. It is so true. Thank you, thank you. Right back at you. One of my favorite phrases is memento mori, which means remember death. And I literally like today giving that talk, I thought I was going to pass out and then speaking with all these incredible women after, it literally, my heart literally will ache because there is so much beauty in the world. We are so lucky to be alive as someone who survived, you know, brain, a brain tumor, brain

[00:22:45] surgery, massive car accident. You wake up every day, you know, my sister-in-law, she passed when she was 32. What she wouldn't give to have all of these experiences right now, even the ones that super suck. So when I wake up in the morning, if I'm having a hard day, what I think to myself is, you know, I'm alive and how freaking lucky am I to be alive and where can I go put my body? And when I wake up in the middle of the night, I usually obsess over all the things I'm doing badly.

[00:23:11] And then I'll calm myself down by saying, focus on the three things you know you can do tomorrow that will absolutely make a difference for someone. Even if it's one person, there are three things you can do that you can control. And then as you do that, having been a Walmart cashier for 18 months, the beauty, like humans are freaking spectacular. And then the more you fall in love with them, the more we have to protect each other. We have to cherish humanity. And the folks who are doing it all for everyone else, they are not paying attention to themselves.

[00:23:41] They're called caregivers, not care getters. And I heard a story today of somebody who was in such intense caregiving situation that they thought about how to take their life. And they thought about using a gun. And this is hard, but I'm going to share it anyway. But that they didn't feel comfortable doing. And so they said, you know, the way I'm going to do it is I'm actually going to go put the hose in the car because that seemed peaceful. You know, the only reason they didn't do it? Because they didn't want their kids to discover them.

[00:24:11] Caregiver. So here's this person who in the end found a way through, ended up getting access to help. Good. But the thing that made that happen was their sense of responsibility for everyone else. And that's what I would say. Caregivers, they are inside out souls, right? Who just give and give and give. And we have to do everything we can to protect them. Well, Alexandra, thank you for putting a consistent light on this issue that is only becoming more just based on the time that we're in.

[00:24:40] And this has been an incredible conversation. I've been speaking with Alexandra Drane. And Alexandra, thank you so much. Thank you. Thank you. Thank you. Thank you to you. Thank you for all the caregiving you are doing on the regular with helping to inspire women everywhere. And men too. All of us. Thank you. All of us. Unpaid caregivers are an unrecognized and underappreciated backbone of our healthcare system in so many critical ways.

[00:25:06] Most importantly, we know unpaid caregivers allow individuals to live independently longer and they provide critical emotional support. And many times, they do all this while balancing personal, financial, and emotional strain. We also know these people make an objective difference, one that can even be measured financially. Specifically, unpaid caregivers contributed more than $1 trillion in economic value in 2024

[00:25:35] according to a report from AARP's Public Policy Institute that was released in April. That same report found that 59 million family caregivers, those who are caring for adults, provided nearly 50 billion hours of care. This equates to 24 million full-time workers or the equivalent of 17% of the nation's full-time workforce.

[00:26:01] Perhaps most relevant for the listeners of this podcast is that according to a March 2024 Wells Fargo economics report, we understand that women specifically make up nearly 60% of unpaid caregivers. At Joint Commission, our mission is to enable and affirm the highest standards of healthcare, quality, and patient safety for all.

[00:26:24] We cannot enable high-quality, safe care without recognizing the many, many people who carry so much of that care responsibility at home and in communities. This is why we feel so strongly about our role as convener and supporter of unpaid caregiving. And it's why last year, we partnered with ARCHANGELS, the nationally recognized movement focused on

[00:26:50] reframing how unpaid caregivers are seen, honored, and supported. Together in October of 2024, we launched the CARE Badge Initiative, a public recognition designed to celebrate the skills, experience, integrity, strength, and devotion of these critical, yet often under-recognized, and under-appreciated caregivers. The goal of our program is to elevate learning opportunities, visibility, and honor for the

[00:27:17] caregiving community, to connect caregivers with vital resources, and to help communities and employers, in particular, better recognize and value the contributions, and most importantly, the valuable skill sets these individuals possess. Valuing caregivers is one of the elements of Joint Commission's broader commitment to elevating care quality and patient safety. And it's why we are proud and privileged to partner with ARCHANGELS and their remarkable

[00:27:45] CEO and founder, Alex Drain. Our goal is simple. To elevate care. Together. Together. Tonight.�