The Unacknowledged Value of Unpaid Caregivers – Alexandra Drane, CEO of ARCHANGELS

Dr. Rishi Desai: Hi, I'm Dr. Rishi Desai. What if you had a long-lasting job that required constant problem solving, coordinating health care, navigating complex systems and much more, but you didn't get paid for it and you couldn't put that experience on your resume? Well, that's the situation caregivers of loved ones face, and something today's guest is working to change.

Alexandra Drane has been involved in many aspects of the health care sector, including starting several companies and serving as a wellness expert for Prudential. In the last decade, she focused on changing the ways employers and jobseekers view the role of an unpaid caregiver, and started the organization Archangels to accomplish this goal. Thank you so much for joining us today.

Alexandra Drane: Rishi, I'm super excited to be here. I wish you all could see what I see, because Rishi exudes kindness and curiosity. That is such a wonderful balance.

Dr. Rishi Desai: I'll say if you think flattery is going to get you anywhere with me… it will! So, I appreciate that. It's very kind. Tell us a little bit about your background. What got you interested in this problem, and maybe even more broadly in healthcare in general?

Alexandra Drane: We'll have to start by saying what got me interested in this problem was not where people usually start when they talk about unpaid caregivers, right? Unpaid caregivers are anybody who's caring for or looking out for a loving on somebody—could be a family member or neighbor or co-worker. Most people who got into this space got into it because of a personal story. Because there are a lot of personal stories, because it is a really, really, really, hard job. People get no credit for it, but they often get sort of tortured in it. The system almost revolts against you as an unpaid caregiver. 

I love to point out, because I am a super geek that while I myself have been a caregiver, am a caregiver, have needed a caregiver, and will most certainly be a caregiver multiple times over again—thank you, Rosalyn Carter, for the best quote ever—we got into the space because of the data, because the data is overwhelming. The data has been overwhelming. And COVID has just supercalifragilistically exacerbated the overwhelming-ness of the data when it comes to the 43 percent of adults in the US right now serving as an unpaid caregiver. Thank you, no, thank you COVID.

Dr. Rishi Desai: Wow, it strikes me as probably the largest job out there, right? 43 percent? I can't think of anything that that we collectively do that's higher than 43 percent. Save maybe sleeping and eating, you know, which hits a hundred percent. But in terms of jobs, that’s probably number one. It is that about right?

Alexandra Drane: Yeah, it's funny that you mention sleeping and eating because one of the things that paid caregivers do is they often don't get to sleep as much.

Dr. Rishi Desai: Yeah.

Alexandra Drane: They often overeat, right? Overeating is a form of self-medication. I think it was our study that we were published in partnership with the Blue Cross Blue Shield Association. It was Archangel’s data that even before COVID, unpaid caregivers are self-medicating with food. They're comfort-eating. The CDC study that we published looked at this as of COVID. It looked at the increase in the number of people who are using substances to cope. That rate has gone up by 5X for unpaid caregivers, and it's five times more actually.

I'm going to back up. Ask me the question about substances because I want to give credit to the CDC study first. It’s freaking incredible data.

Dr. Rishi Desai: Do you mind saying a little bit more about substances? Like what substances are folks using to cope with their caregiving responsibilities? What does that mean exactly?

Alexandra Drane: Well we’re talking about this incredibly massive population, right? There are 42 percent of adults in the US in this job. It is a really hard job and it's a job you get no credit for, right? We're trying to change all that, but what happens when you have a job that has a lot of intensity? You’re stressed, right?

This job, for which you're not recognized and not getting usually much support, creates an enormous impact on you mentally, physically. And folks’ natural response to that is to self-medicate. I know I do.

We published a study in partnership with the COPE Initiative. It actually got published by the CDC, which published three. This is the second one and it looked at the impact of COVID on things like, use of substances. The substances in particular that this study was looking at were drugs and alcohol. Raise your hand if as an unpaid caregiver you have, at the end of a very long day, filled with things you feel really good about sometimes and really awful about others—you have looked for the answer in the bottom of the glass or two glasses or three glasses, or taking a sleeping aid or something else, whatever works for you.

Actually 33 percent of unpaid caregivers, over the course of COVID, increased their use of substances to cope. That's five times the rate of the rest of the population. That's drugs or alcohol. I'll tell you, it's a luxury when I get to drown my sorrows using that.

But when I am in an active caregiving role, I can't. I can't because I have to get up at three o'clock in the morning, right? I want to make sure this person's breathing. I have to check to see if they take their medication. So, what do I do then? Well, then I eat.

There was another report that we did in collaboration with the Blue Cross Blue Shield Association that used Archangel’s data. It looks specifically at the percentage of caregivers who are coping through food, who are comfort eating, and it's 50 percent. Caregivers, they take on a lot. They never complain. They're gorgeous at what they're doing. This job is an incredibly important one. It's often the most important job they'll ever have. They care about it more than anything else. Not only are they getting no support. They're often getting protested against in some way. Just go to the doctor and try and get your mom's medical records and see how they treat you, right? So, what do you do? You self-medicate.

Dr. Rishi Desai: I'm a pediatrician and I’m at a unique time in my own life. I'm expecting a baby girl in about six weeks. My mind is on the fact that in six weeks, I'm going to lose sleep. I'm going to be caring for this young baby. What I've come to realize is that the village does kind of rally. I've got friends and family that have donated food to be in the freezer, and that help us in other ways.

There's this kind of rally cry around caring for a baby, an infant—society kind of gets that. With caregivers, sometimes I feel like it's the opposite. Like sometimes people in my own family scrambled away. They said like, "Look we can't take care of it. You take care of it." It’s like throwing the hot potato around. Society doesn't socially reward that role in the way that they do for a new parent. I'm curious how that plays out. If there's any data to support these kind of observations I've thrown out?

Alexandra Drane: Yeah. Oh my gosh! Congratulations, a baby Rishi! I'm so excited.

Dr. Rishi Desai: Thank you.

Alexandra Drane: We will need multiple baby pictures, if you don't mind. And when COVID is over, I request permission to hold your baby because I love holding babies. Especially when they're not my babies and I get to give it back. My babies are now at fourteen and sixteen.

I love that you give that analogy because it was one that really struck me when I had babies. I would be in meetings, and somebody would lovingly lean over be like, "Alex, you've got spit-up all down your back." Everyone in that meeting would be like "hee hee, she's got spit-up" Then fast forward like ten minutes, we're still all telling adorable stories about our babies and how tired we are. People think it's fantastic, right?

It is not just normalized. It is celebrated. It's for a lot of reasons, thanks to the movement twenty to thirty years ago, that helped make it okay to have babies and talk about having babies, but we know that was a culture change in and of itself. It's also because the act of having a baby brings hope, right? Like good things are coming. You're going through a bad period. When is this going to end? Because that baby who is waking you up all night is going to come into someone who sleeps for six or seven hours at a stretch at some point—please Lord—and it does happen. Then they sleep all day, like my teenagers want to.

The reality for unpaid caregiving of an elder is different, because there is not that light at the end of the tunnel. For many, this is why many years ago we actually started a different movement—called Engage with Grace—which was all about, how do we help support people to live their very best days until the last? The system doesn't do that very well. It over-treats. It over-medicates. It gives people too much. It doesn't talk like families talk about what is the best care for this elder going to look like? Because if you did have that conversation, you’d do a way better job as a family coordinating what that care was.

We have data that shows about 50 percent of unpaid caregivers don't know what that term is, right? Or they feel stigma associated with it. They don't tell the truth about it at work. They think they're not going to get a promotion for it, that they’ll get shunned for it. We see this varies by cultures, by ethnicities, by gender. A lot of what Archangel is doing is saying, "Okay." (I'm going to stay with caring for an elder first, and then we'll come back to sandwich generation, which you are about to be my friend. )

When you are caring for an elder in this role, what if our goal became, not only are we going to destigmatize talking about unpaid caregivers? Not only! We're not just setting our bar on normalizing it. We're going all the way towards: We are going to mother-freaking celebrate it, right? We are going to say “these unpaid caregivers are badass warrior angels.” That's the name archangels is about. We're going to spread our wings out over these people that were loving so fiercely, doing everything we can to care for them. Then we, as a society, are going to say, "You rock, Archangel. What you were doing is incredible. I see you. I love you. Thank you."

We're not going to say to that unpaid caregiver “what can I do to help?” Because caregivers never answer that question. They say “I'm okay.” They never ask for help. Instead, we're just going to insert our bodies there. We are going to fill fridges. We're going to mow lawns, come and sit with somebody's father. Say “go for a walk right now I insist.” You put your body there. You don't just ask to help.

Now I have to answer a little bit, because you're about to be a baby daddy. Here's what's so exciting about the world now as it relates to sandwich generation caregivers. It's going to sound horrifying that I say it's exciting. COVID has really exposed the extent to which unpaid caregivers are laid bare in today's environment when it comes to getting the recognition or support they need. The third CDC study that we did said, as of COVID, 43 percent of adults, as we said, are unpaid caregivers in general. 70 percent of them are having at least one adverse mental health condition. But 23 percent of adults, Rishi, are sandwich generation carriers. 23 percent of all adults across the US are in the sandwich generation role, which means you're caring for babies, or infants, or children under 18, as a parent or guardian at the same time that you're caring for somebody over 18 or people over 18. That has profound impact on your health overall.

Dr. Rishi Desai: I’m curious about planning. When you go through life, a lot of times, people they might plan to find a partner. They might plan to have kids. They might plan retirement. They plan these different stages of their life. In your research, do people typically plan for elder care? Is that something they strategize around? Do they think about it? Save for it? Or does it more often than not kind of land in their laps and then they're scrambling to pick up the pieces? Like what is often the story? I'm just curious.

Alexandra Drane: I think it's a "yes and." I saw this whether I'm working with executives or when I was working as a cashier at Walmart. Whoever you are, whatever your style of interacting with the world around you, whether you are somebody who has OCD and is overprepared for everything, or you're someone who rolls with it, with a smile and glory all day long. I have never met an unpaid caregiver who's going through it for the first time who wasn't almost put to their knees at the extent to which they could never have predicted what would actually happen and how they would feel about it.

You mentioned before really needing support. You have built this gorgeous community, right? They're going to be there for you. The CDC's data showed that there are things that really increase... we use the term caregiver intensity. There are things that really increase that level of intensity. Family-related disagreement, stress over money, not having time for yourself, feeling under prepared. But there's also one overwhelming factor that decreases that intensity and that's knowing that you are supported, feeling supported.

As were thinking about, you know, if your first time caregiver it's really hard to know what's coming. So, what you really need to do, anyone who's listening, whose not yet fit in this role when it happens to you. And this is this is the first time they're in that role. You need what we call your "red phone." You need to know ahead of time who is the person you're going to call when everything hits the fan.

It happened for me one day, and I work in the space. It was a moment I remember so particularly well. I was sitting at my desk, as I am right now talking to you, and I got a phone call about somebody who I love so fiercely. Like with every atom, every fiber of my being. It was their paid caregiver saying, "We are standing outside the emergency room." (It was my dad.) "I think your dad might be having a heart attack." 

I had prepared for everything as if related to COVID. I somehow forgot that my dad could have other things happen. You know, he's 79 years old at that point. So, we were not ready for what if he has a heart attack. I remember the blood draining from my face. Like standing straight up telling her I was going to call her right back and literally walking around in a tight little circle not able to think, I couldn't process. The only thing I needed to do was to call my friend, Lisa Sueman. I love Lisa Sueman. She's not my best, best friend. She is a best friend, But my body was like, "Lisa Sueman is going to know what to do." She was my red phone. And I called Lisa. You know what? She did know what to do.

So, everybody: have a red phone. It might not be who you think it is. It might change, but know when things go horribly wrong, who is that person going to be. The first thing you need to do is get a red phone. Be prepared, at least with that. Then separately, start reading up. Being an unpaid caregiver, things going wrong is essentially just having caregiver stress, financial, stress, relationship stress, workplace stress, all come together at once at one time. There is no one thing that can support you. You will need a financial aid. You need the legal aid. You will need a personal assistant. You will need a home care aid, right?

So, there's no one way to prepare. So, the best way to prepare is to recognize that you're in it. Be ready to ask for help. Freaking challenge yourself to ask for help. But most importantly, equip those around you to see that you're in that role and you tell them, "When you see me drowning come and get me because I'm not going to ask you for help."

Dr. Rishi Desai: So, just so you know, and for Lisa, when you're listening to this afterwards, I'll be calling you. You sound like a wonderful friend—certainly, someone I would call and appreciate and gain advantage from. 

You've been in this space for a while, and you see how the US has navigated this role of the caregiver and what they've done to support from a federal level or even the state level. Are there other countries that do this differently? Are there other models that like, yeah, we could learn from this country or that country? I'm just curious if you've come across other instances where you're like, “Gosh, if we did more of that, then that would actually help take the burden off?” Because like you said, maybe the state could put a body in there. Or mow your lawn, or give you the things you need without asking for it, explicitly, or paying for it.

Alexandra Drane: Yeah, so I am not an expert in other countries per se. I could give you an anecdotal answer. What I can tell you, is I think of the United States as fifty little states, fifty little countries. I can tell you that absolutely, there are vast differences in how state deal with it. I'm going to use this an example. Two best-in-class states in my opinion: New York and Massachusetts. These are two states that have with great intention over and over again and increasingly since COVID, worked to put in place supportive infrastructure.

The state of New York, for example, has launched statewide the ability of people to tap into the caregiver intensity index. The caregiver intensity index is the tool that we use at Archangels. Literally a two-minute quiz, like a two-minute therapy session it has been described to us as. You go through it and it delivers you back a score. You're in the green, yellow or red. It tells you, you know, here are the two things most driving that intensity. Here are the two things most alleviating it. Then for each of those, it says go here for help. In this particular circumstance, it cross walks you over to NY Connects. Anybody in state of New York has access to it.

With the state of Massachusetts, in partnership with Blue Cross Blue Shield of Mass and the Massachusetts caregiving initiative, we're launching a similar effort. These campaigns have two things in common. One: their goal is they have that campaign—and I'm using the term campaign very intentionally—because if unpaid caregivers are not walking around aware that they're in that role, then they're not availing themselves of these resources. They're not raising their hands or answering that email. Job number one of this campaign is to say, "Are you mowing somebody's lawn, right? Are you worrying about somebody? Could you take e vacation right now for three days? No, why not? Okay, you're probably an unpaid caregiver. 43 percent of us are, one in four of us are in the red. We see, we love you. Find out your intensity and then we can get you supported."

Then the second component is, so you get your intensity score. You get crosswalked to resources, but you know what these states are also looking at? It's how can we aggregate in an anonymized way, what is the level of intensity across our states? And how well are we doing in a supporting it? Can we make a data-based argument to be putting more resources to work, at the things that are most driving that intensity for our particular state. So, I do think, there are examples across the country of states that are crushing at doing their very best in data-driven and heart filled ways to support this extraordinary backbone of our country.

Dr. Rishi Desai: Are there reasons why more states don't follow the lead of New York and Massachusetts. Like, is it like a misunderstanding? Is it a myth around the whole field? Like what is preventing other states from clamoring to catch up?

Alexandra Drane: I think it's taken a long time for people to understand because the role and import of unpaid caregiving is largely or has been largely invisible up until COVID. I think people—they have silos in their head, where they're attributing cause and effect. They're thinking about top and bottom-line impact. Most states, most individuals don't have a bucket in their head of unpaid caregiver. If I want to impact top and bottom line of my state, you know, health plan, employees: I'm going to think about their roles and not the caregiver. I'm thinking. I have to think about your role with your diabetes. I have to think about the fact that you have a hard time with transportation.

Actually the underlying most foundational element of everything that drives top and bottom line, and certainly emotional impact across our country, is being an unpaid caregiver. For many states, until they get to that place, then if you don't know what it is, you can't see it, but I promise once you see it, you can't unsee it. Once you start realizing, "Oh my God, unpaid caregivers are everywhere." If they're in this role, they're not coming to work. Guess what? If they're not coming to work, I'm not making money off them. I'm not productive. Guess what? Then they have to quit their job, replacing their salary cost more. Now they're on the state's system. That's costing the state. I just don't think it's been exposed, the extent to which this which has massive top and bottom-line impact, and that's slowly, but surely happening now.

Dr. Rishi Desai: Do you mind just defining the sandwich generation. You brought it up earlier and, you know, I have a son. So, this will be my second child and I have aging parents. So, I presume I'm a sandwich kind of for that reason, but if you could spell it out for me.

Alexandra Drane: Oh my love, you are in this sandwich generation. Yes, so sandwich generation caregiver is anyone who is serving as a parent or guardian, for anyone or people who were under 18, at the same time that they are caring for someone who is over eighteen. 23 percent of adults in the US right now are in this role. 23 percent, right? I just want to say quickly. I think an easy way to think about COVID is that it has doubled everything. Before COVID about 21 percent of adults were in this role. As of COVID, it's 43 percent

Dr. Rishi Desai: Wow.
.
Alexandra Drane: And I can tell you that before COVID—this is way more than doubling—about eight percent of unpaid caregivers were in the red. As of right now, it's 24 percent. If you are a double duty caregiver—which you are Rishi, right?—because you are a paid caregiver as a doctor at the same time as you're an unpaid caregiver as a papa and a son, you double it again, right? COVID doubles and being a double duty caregiver doubles it yet again.

So, I want to give you four cohorts. If you are cohort one, we're going to say that means you are not serving as an unpaid caregiver in any way at all. Your rate right now across the U.S., the percentage of adults in that cohort with active suicidal ideation—that means they had serious suicidal thoughts in the last month—is four and a half percent. If you go to cohort two, that is somebody who's serving only as a caregiver in the parent or guardian roll, it doubles. Nine percent of adults. This is our CDC study number three. Nine percent of adults in that role have suicidal ideation. If you go to, "now, I'm only caring for people who are over 18: it's 10 percent. What do you think the percent of adults in the U.S right now who are sandwich generation caregivers in the last thirty days have had serious suicidal thoughts.

Dr. Rishi Desai: To be honest, I'm scared to answer this question. The last thirty days is recent. It's not like you're saying last year or five years or something like that. I mean, no, so I'm curious to know. What is that percentage?

Alexandra Drane: It's 52 percent.

Dr. Rishi Desai: Wow.

Alexandra Drane: I wish you all could see his face right now. What that means: Just picturing it, you just walked into a room of sandwich generation caregivers. That means, if you have considered seriously suicide in the last three days, you are actually normal.

That's actually bright spot, believe it or not. Like, there was a bright spot before—we talked about knowing that support exists. Having support reduces that intensity and that's protective. Knowing that you're not alone is in it of itself a first line of care. So, anybody who's listening, right? Who's like, "Oh my God. I thought that was the only one who sometimes lay awake or feel so maxed out or feels like I'm failing at everything." You're not alone, you're not alone. And may that in and of itself reduce intensity.

I actually have a funny story. Before I had my first baby, a friend said to me—a friend I really respected—she said, "I just want you to know when you have this child, in the beginning there are going to be days that you're going to be like, "’Wow I got hitched to the wrong person, and I made a mistake to have a child, and my life is over.’ I promise you, that's not true. You are hitched to the right person. You will be happy you had this baby. Everything will end up okay."
 

There was a day when I was trying to learn breastfeed. I tore open a double duty champion sweatshirt because I was so mad that it wasn't working—like rage in my body. I'm overthinking it, and I'm like, "I'm definitely leaving Antonio. And I'm definitely never having more children." There was this voice that came in my head. It was like, "Oh, you remember this. You had a friend who told you it's going to be okay."

So, when I see strangers on the street who are pregnant and I know they are pregnant—first, I like ask a question trying to figure it out—then I'll say, "Is this your first child?" If they say yes. I'll say, "Okay. I'm going to tell you something. I want you to remember the crazy lady on the street who said to you, 'when you have a baby there will be days in those first six weeks where you'll be like, "aaaaaah!"' I want you to remember the crazy lady on the street who said you are going to be okay. This is normal."

I think for unpaid caregivers. I wish I could like go grab every single one right now and hold them and be like, "You're going to be okay, you know. You need your red phone. Let's get you as prepared as we possibly can. Get your intensity score. Let's crosswalk you over toe the resources that exist that you didn't know about but they are, there but most importantly we see you. We honor you. We love you. What you're doing is extraordinary and you're doing it well."

Dr. Rishi Desai: Wow, that gave me chills. That's a powerful message, very powerful message. Maybe a good segue into what you're doing organizationally and what Archangel is all about. You might just speaking to kind of the mission and what you guys have accomplished.

Alexandra Drane: Yeah. In most formal terms, you can think of Archangels really as a movement and you feel that, right? The movement component. But it's also platform that is reframing how unpaid caregivers are seen honored and supported, using a combination of data and stories, and doing that in public and private ways.

The way I would describe it in terms of how you would feel it in your body and your bones :It is like this recognition that it's a movement and a process to sort of formalize that being an unpaid caregiver, or as we call it being an archangel, is a job. You should get credit for that job because it is giving you invaluable skills and people should be rushing as fast as they can to hire as many unpaid caregiver—as many archangels as they can. Because these unpaid caregivers are multitaskers. They never take no for an answer. They have learned to work the system, right? Unpaid caregivers have invaluable skill sets.

So, Archangels work is a way for... you know, people feel shame, like "I took five years off of work because I cared to my mom." That wasn't five years off of work. That was work. That was Archangels work, right? That gave you skills So put that proudly on your resume. If you go to archangels.work, you can download that badge. Loudly stick it on your resume, and it has a skill builder. It prompts you to remember all the things you did and check those boxes and its going to give you a quick little thing you can cut and paste on your resume.

Now, let's remember a lot of the people who are unpaid caregiver roles—they're not using LinkedIn, right? So, okay, write it on your job application. Just know that you have done extraordinary work and we're going to get you credit for that work. That job like any job has intensity and so our job at archangels is to help you know what your intensity level is,  validate you in it, know what's driving it and alleviating it, give you that score—green, yellow or red—and then crosswalk you over to these resources that exist you didn't know about.

The other beautiful thing about that I will tell you—and Rishi you'll appreciate this because you already have one, you're about to have another. As a mama, there are days that I come out of my office. I'm in the red and I will let my family know, like "everybody mama is in the red. I can't explain calculus to you tonight. It's not going to happen." There are other days that I come running and I'm like "I'm in the green, right? Or I'm in yellow. Like it's okay. Safe to approach." Having that shared language in your workplace, your family, and your community is a wonderful way to help not just destigmatize, not just normalize, but create language that celebrates and creates action-oriented vocabulary for people to get support when they need it.

Dr. Rishi Desai: Yeah, that makes a lot of sense and it hits home. I mean, I have family members who have been caregivers for a long time. I think, and I've had countless conversations with them about that uneasiness. About going back, like you said. Back into the job market. When in fact, they've been working their long and in fact working and developing a whole host of skills that could easily help in other jobs. So, I think that's a really powerful message and what you're doing is absolutely incredible.

Alexandra Drane: Yeah, we feel very lucky we're doing it. And I have to say it to you, I can't say it enough: You are a double duty carry over. You are a sandwich generation caregiver. So it's a lot, you're caregiving for everyone who listens. I'm watching the heart that you pour into what you're doing, right? That creates intensity. Yeah. So, let's make sure that you are feeling supported everything you're doing. Anyone is listening. Take a moment to love on yourself and love on anyone else you know who's in this role. Make sure people know that they're not alone and that you're there to be their red phone. I'll be your red phone any day Rishi.

Dr. Rishi Desai: That's actually probably a perfect way to end. Thank you for saying that. That's very kind of you and thank you for joining us today.

Alexandra Drane: It's been my great honor and pleasure. Thank you.

Dr. Rishi Desai: I'm Rishi Desai. Thanks for checking out today's show. Remember to do your part to flatten the curve and raise the line We're all in this together.

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