The Caregiving Soul:

Building Health, Wealth, and Equity for Family Caregivers

Hosted by Dannelle LeBlanc, May 15, 2023

Dannelle speaks with Jason Resendez, President and CEO of the National Alliance for Caregiving (NAC), where he leads research, policy, and innovation initiatives to build health, wealth, and equity for America’s 53 million family caregivers. On this episode, we are exploring how organizations can impact the infrastructure of care in the United States on the national level. As more people become aware of the importance and challenges of family caregiving, there is a higher demand for better support and resources for people in care partnerships. By bringing family caregiving into the public consciousness, policymakers, and organizations such as NAC can begin to create meaningful change that improves the lives of caregivers and those they care for. 


About Jason Resendez

Jason Resendez is the President and CEO of the National Alliance for Caregiving, where he leads research, policy, and innovation initiatives to build health, wealth, and equity for America’s 53 million family caregivers. He is a nationally recognized expert on caregiving, healthy aging, and the science of inclusion in research. In 2023, Jason was named one of the 47 most consequential leaders in health, science, and medicine by STAT News. Prior to joining NAC, Jason was the founding executive director of the UsAgainstAlzheimer’s Center for Brain Health Equity and was the principal investigator with the Centers for Disease Control and Prevention (CDC). While at UsAgainstAlzheimer’s, Jason pioneered the concept of Brain Health Equity through peer-reviewed research, public health partnerships, and public policy. 


[00:00:00] [Music] 

[00:00:03] Jason: One of my favorite quotes from our friends, is former First Lady Rosalyn Carter, who said, “There are four types of people: people who have been caregivers, who are caregivers, who will be caregivers, or who will need a caregiver”. And that’s so true. Like, this is why it’s so complex, is because it touches so many facets of our experience in our society, but there’s a benefit to that in that it becomes universal.  

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[00:00:26] And that’s becoming more and more the reality as more and more people are actually fulfilling those roles, taking on those roles, and that creates opportunity for these big policy shifts. So, I think it, it’s hard, and the road is long and the arc goes in different directions, but it’s bending in the right direction for us and for family caregivers. 

[00:00:50] Dannelle: On this season of The Caregiving Soul, we’ve learned so much from the stories and experiences of people who care. We’ve witnessed the challenges and celebrated the wins, big and small. Today’s guest, Jason Resendez, is the President and CEO of the National Alliance for Caregiving (or NAC), where he leads research, policy, and innovation initiatives to build health, wealth, and equity for America’s 53 million family caregivers. 

[00:01:24] Welcome to The Caregiving Soul. I’m Dannelle LeBlanc. 

[00:01:31] [Music Ends] 

[00:01:31] Jason: The most important thing that we can be doing is making sure that we’re centering the lived experiences of family caregivers and bringing the caregiver voice and experience into everything that we do. We do that in many ways. We do that one by bringing our full selves as leaders of the organization, as the staff of the organization. Everyone on our staff, pretty much, has a caregiving story that cuts across different aspects of caregiving from disability to dementia care.  

[00:02:06] So, we bring our full selves to the work, but then also in the projects that we lead, in the initiatives that we undertake, whether that’s policy or research, we are constantly engaging family caregivers and being intentional about bringing family caregivers to the table to not just provide insights, but help to drive the work, so that we are centering and building initiatives around the needs and lived experience of family caregivers. 

[00:02:34] So, we try to be as intentional as possible, to make sure that we are centering those views. And then the last thing that we do is our research. Our research is built on the lived experience as a family caregiver. So, everything that we do is centered in data, centered in evidence, particularly our Caregiving in the U.S. project, which is the most comprehensive data on family caregiving across a lifespan, across conditions, that we’ve been doing since 1996. 

[00:03:02] Dannelle: I love that you say that your staff bring their full selves because that’s exactly what’s needed. And it connects to a challenge that we have in outreach and people who are caring for a loved one, or a family member or a friend, there’s this idea that we can’t reach family caregivers because family caregivers don’t self-identify.  

[00:03:33] But that’s not on the family caregiver. That’s on us as advocates, and support organizations, and others to figure out how do we reach people to connect them to resources and support and find out where the pain points are? And so, what have you found works? How do you connect and reach family caregivers when we’re not calling ourselves family caregivers? 

[00:04:05] Jason: I think that’s a really important point and it is a shared responsibility, right? We can’t put this on the shoulders of family caregivers alone when we have a culture and a system, an economic system, a healthcare system, that is really geared towards exploiting the family caregiver. Right?  

[00:04:26] So, I think that, and of course people are not self-identifying when there’s no supports, there’s so much stigma related to caregiving. It’s like, well, what are the real rewards of identifying as a family caregiver? So, how can we make caregiving more sustainable and less harmful for people. And so, it’s that shared responsibility.  

[00:04:46] And so, I think about the ways that we approach it is really looking at it from one, a cultural perspective. So, thinking about how we raise the visibility of caregivers in the culture and encourage others, whether that’s in the media, within journalism, to accurately portray caregiving. And so, we’ve been very excited about just how much more visible caregivers are becoming in popular culture, for example.  

[00:05:13] Like you see, there’s an amazing storyline in This Is Us where there was many caregiving plot lines and stories interwoven throughout that. We see that in other shows and movies. And we’re just seeing more from a cultural perspective that I think helps to shift awareness and help to address stigma. So, the culture shift is important.  

[00:05:35] But then there’s a whole aspect related to infrastructure where we have to think about the administrative infrastructure that needs to be in place, the economic infrastructure that needs to be in place, in order for identification to be meaningful and for it to lead to caregiving being easier. [Laughs]  

[00:05:54] And so, from, I think about on the healthcare side, how are we putting in place interventions and reimbursement strategies that incentivize providers to better integrate caregivers into the healthcare system so that if someone says, “Hey, I’m a caregiver”, then great, you’re gonna get screened for mental health supports, you’re gonna get screened for social determinant health supports. You’re gonna get screened for caregiver related planning, for example. And so, that’s a positive for identifying as a caregiver. 

[00:06:25] In the workplace – the same thing. Like right now, we know from Caregiving in the U.S. data that millions of family caregivers in this country are not reporting their caregiving responsibilities to their employers, because they’ve experienced discrimination due to caregiving, that you’re not getting a promotion, you’re getting your hours reduced. You’re getting overlooked in the workplace because of your caregiving responsibilities. So, that doesn’t create an incentive for a caregiver to raise their hand and say, “Hey, I’m a family caregiver”.  

[00:06:54] So, you have to think about the importance of having policies like paid family and medical leave that make it easier for people to balance care and work, to think about non-discrimination policies to outlaw that kind of discriminatory practice. I mean we’ve seen several states and several municipalities that on and really taking a playbook out of the parental care movement in terms of addressing some of these challenges.  

[00:07:18] We have to collectively recognize the value that family caregivers bring to our families, to our communities, to our workplaces, to our health system, and then start to put in place the infrastructure that can sustain and invest in that value, versus over-rely and exploit that value. 

[00:07:40] Dannelle: Absolutely. Gosh, it’s a lot of work. And you know what, also it’s about educating the providers, the employers, and other stakeholders even if someone doesn’t raise their hand and say, “I’m a family caregiver”, doesn’t mean they’re still not in a caregiving position. So, we have, I think, in the workforce, is it one in six people are in a caregiving situation? So, whether or not that’s being reported or communicated, there’s still an impact. There’s so much value that we bring that I think we look at the front end cost and time and energy, versus the long view, which is more expensive to keep family caregivers on the periphery [Laughs] of – 

[00:08:36] Jason: Yea.  

[00:08:36] Dannelle: – healthcare. 

[00:08:37] Jason: I totally agree with you. It’s about demonstrating and making more visible, the value that caregivers bring to the table. To your point, 61% of family caregivers are providing care while working. Half of those employed caregivers are working full-time. And when you have in place supportive policies, we see that caregivers are more likely to stay in the workforce, to stay with that employer, for longer. So, then you’re reducing costs in terms of having to rehire, you’re retaining talent. 

[00:09:06] And as the dynamics, the demographics, shift in this country, that’s gonna become and more important and we see how important it is in the current job market, right? And you’re seeing many companies who are stepping up because of that realization. The same thing in the healthcare system. You’re absolutely right, caregivers are, like Chobani and Levi’s and Patagonia, and putting in place really supportive family policies, an extension of the healthcare workforce.  

[00:09:32] The better that caregivers [Music] are integrated, the better that the patient is supported and the less harmful that that care becomes for the caregiver, from a mental health perspective, from a chronic disease perspective. 40% of family caregivers are managing two or more chronic diseases while they provide care, and without adequate support, that’s gonna get worse or it’s gonna be hard to manage. And so, really thinking about how better supporting these caregivers it leads to better outcomes, and in term can be a cost saving to the system is, is really critical.  

[00:10:07] And there’s some really critical infrastructure that we need to put in place. Like how do we integrate caregivers into the electronic health record, for example, to be able to better monitor? How are we just asking within a plan, “Are you a caregiver?” I think about, with my insurance, I get asked about many different things. I’ve never been asked if I’m a caregiver. And so, I think that there’s this shift that we need to, in order to better collect data on that value and to make that argument, but it’s one that, there’s plenty to, to use right now in terms of developing that value proposition. 

[00:10:41] [Music Ends] 

[00:10:42] Dannelle: So, how do we, Jason, get from this place of creating new policies that support caregivers, and in turn the people that we care for as well, how do we get to that place from building more public awareness? 

[00:11:03] Jason: I think the way that we do that is for folks to be more open about their caregiving experiences. And I think we are seeing that start to shift. I think we’re seeing, lot of folks, particularly within the media, folks like Bradley Cooper, like Seth Rogan and Lauren Rogan in the dementia space who’ve been really open about their caregiving experiences. Bradley Cooper was a caregiver for his father who had cancer and helped to manage that, and that was really eye-opening for him, and he’s been very open about that work and started a foundation called the One Family Foundation, to support caregivers. And so, I think we’re seeing more of that. 

[00:11:45] A member of the National Alliance for Caregiving recently launched something called the Creative Care Council. That includes folks like Bradley Cooper, Seth and Lauren, and other celebrities to share care stories, to talk about their caregiving experiences. And so, I think when folks see people like that, that they see in the mainstream media, that they see in the movies that they go and watch, that helps to create a sense of awareness and create a sense of it’s okay to share. And so I think that’s critical. I think that’s one element.  

[00:12:18] I think another element is having folks within workplaces talk about their caregiving responsibility, right? Seeing more folks within business and CEO’s talk about their caregiving responsibilities is another way to signal to employees, across ranks, that, you know, it’s okay to be a caregiver, but we can’t forget how important the policy is to that, because the difference between a Bradley Cooper and a CEO talking about caregiving is means and protection, right? 

[00:12:50] Like the CEO of McDonald’s is very different than a line worker in McDonald’s, in terms of their ability to talk about caregiving and the consequences of talking about caregiving and the consequences of caregiving more generally. I mean caregiving impacts all of us, but it doesn’t impact all of us equally. And so, the more means you have, the more privilege you have, the easier it is to talk about caregiving and the easier it is to navigate caregiving. Not that it’s easy, it’s just harder for some.  

[00:13:19] And so, I think we need those policies. And in order for us to have public awareness, we have to have adequate protections of those folks who are speaking up and talking about caregiving. So, that’s paid family and medical leave. That includes job protections, it’s anti-discrimination, it’s economic security. And they go hand in hand, I think. Right?  

[00:13:39] We did a study on the impact of paid family and medical leave on dementia caregivers, and we found that less than half of dementia caregivers had access to paid leave, but of those who had access, less than half actually utilized that leave. And there was reasons around awareness, around how do I actually navigate the application process.  

[00:14:01] So, there’s all these elements there that awareness is also important, in order to take advantage of policies. So, they’re interconnected and they need to happen together in order for us to really see the culture shift and for us to see the shift in actual support, and empowerment, in caregiving. 

[00:14:20] Dannelle: Absolutely, they go hand in hand, the policy and the awareness. So, what have been some of the most effective policies and programs that NAC has implemented in the past few years? 

[00:14:38] Jason: So, we’ve been very focused on the need for national coordination and support of family caregivers, right? Because this is an issue that touches all aspects of society, yet unlike in Alzheimer’s or in cancer, with the Cancer Moonshot, Alzheimer’s at the National Alzheimer’s plan and goal to effectively cure Alzheimer’s by 2025, we have healthy people goals related to major chronic conditions and leading causes of death. 

[00:15:11] Caregiving is just as monumental as those issues. And until recently, we had no national plan, no national coordination around America’s 53 million unpaid family caregivers. That’s bigger than most states in this country. [Laughs] Right? So, when we’re talking about these folks are providing 600 billion dollars a year in unpaid labor, that’s more than the GDP of San Francisco. So, this is huge and we’ve had no national attention and focus. 

[00:15:43] So, NAC has been a leader in pushing for our nation’s first ever national strategy to support family caregivers, which was released in 2022 by the Biden administration. It outlines 350 federal actions to better support family caregivers across 17 federal agencies. So, from things like improving access to respite services, to improving how caregivers are integrated into electronic health records within Indian Health Services, given that they’re populations that are often overlooked and American Indian, Alaskan natives are at the top of that list, with so many other issues.  

[00:16:26] It’s a robust strategy. It represents, for the first time in all of government, approach to coordination around family caregivers as a population, and it represents an opportunity to build on. That’s the thing I like to say is that it’s a first in class, not a best-in-class strategy, but it’s something that we now can work to strengthen and to call for greater federal leadership on family caregiving. So, that’s been, I think a really important development.  

[00:16:56] It’s something that we’ve been working on for many years in partnership with our friends at AARP and other leading organizations, cutting across caregiving, patient advocacy, disability, and aging, and it is a, I think, a, a really important cornerstone to continued organization and power building for family caregivers at the national level. So, that’s been really critical.  

[00:17:22] The other issue is our work on paid family and medical leave. We have been big proponents of paid leave and looking at the need for comprehensive paid family and medical leave. An issue that is really critical for folks who are navigating care for an older loved one, someone with a serious medical condition like Alzheimer’s disease, or cancer, who need care and need job protections, right, and need economic and workplace security.  

[00:17:51] It would, like I said earlier, 61% of family caregivers are caring while working, and there are many impacts of that care that we see in our data. Folks taking absences, folks leaving the workforce to provide leave, particularly women of color, leaving the workforce to provide leave, because they need more time. And so paid leave is a really critical element. It’s not a silver bullet, but it’s a critical element to helping families manage both caregiving and work responsibility. 

[00:18:19] So, we’ve been doing things like organizing the aging community around paid leave so folks within the Leadership Council on Aging, a big aging coalition, we’ve been a leader in helping them to issue their first ever principles on the importance of comprehensive paid leave. We got very close. We saw historic legislation passed in the house of representative in the last Congress, the first time a comprehensive paid family and medical leave package was passed in the house. Unfortunately, it died in the Senate, as many of the care provisions of the Build Back Better Plan did, but we continue to keep hope alive. 

[00:18:58] There’s been bipartisan interest in a renewed push around paid family and medical leave this year. Earlier this year, I helped to launch the Congressional Dads Caucus, led by Congressman Jimmy Gomez from California, that is meant to help underscore how care policies like paid leave are not just women’s issues, these are all of us issues. [Laughs] And so, we are continuing to beat the drum on the need for strategy and national plan, but also for policies that help promote economic security for family caregivers like paid family and medical leave. 

[00:19:34] Dannelle: Well, thank you so much. It’s so much work and so complicated. So, it makes sense to keep hope alive because, it’s a build.  

[00:19:43] Jason: It took 20 years to get the Family and Medical Leave Act, which it was a tremendous development for family caregivers to be able to have that protected time to take time away from work to provide care for a loved one with a serious medical illness, or who was going through a pregnancy. So, that took 20 years. 

[00:20:04] And for things like paid leave, what we like to think, yeah, the road is long, but it’s not a matter of if, it’s a matter of when, and making sure that when it happens, it’s going to be comprehensive for everybody. And I think that’s the case with so many of these care policies, because we are a nation of caregivers. 53 million, that’s 10 million more than there were in 2015. More and more people are going to be impacted by care. 

[00:20:27] [Music] 

[00:20:27] One of my favorite quotes from our friends, is former First Lady Rosalyn Carter, who said, “There are four types of people: people who have been caregivers, who are caregivers, who will be caregivers, or who will need a caregiver”. And that’s so true. Like, this is why it’s so complex, is because it touches so many facets of our experience in our society, but there’s a benefit to that in that it becomes universal.  

[00:20:51] And that’s becoming more and more the reality as more and more people are actually fulfilling those roles, taking on those roles, and that creates opportunity for these big policy shifts. So, I think it, it’s hard, and the road is long and the arc goes in different directions, but it’s bending in the right direction for us and for family caregivers. 

[00:21:12] [Music Ends] 

[00:21:12] Dannelle: Absolutely. I am so happy that this national strategy is being led by an organization like NAC that already has that awareness and I would love to hear a little bit about how in implementing and building these strategies you integrate ways to connect with those communities on the front end? 

[00:21:45] Jason: It goes back to what I said earlier. Caregiving impacts all of us, but it doesn’t impact all of us equally. I mean caregiving in this country is one of the most under-addressed drivers of inequality. The harshest impacts of caregiving fall on the shoulders of particularly women of color, and communities that have been historically marginalized where there’s the weakest infrastructure to support caregiving. And so, that’s a reality that we can’t escape and that we have to center in this work.  

[00:22:15] And so, at NAC, we, one, are very intentional about ensuring that the data that we collect and that the data we use to inform these policy efforts is representative data. We just released a guide for patient advocacy groups of how they can better support diverse family caregivers and looked at that by race/ethnicity, looked at by gender identity and sexual orientation, by income, and by morality and tried to do as good a job as we could in pulling those insights together and engaging caregivers across those identities.  

[00:22:49] But that is something that we are continuously trying to do, and the national strategy is a great example of that work where we were big proponents of the importance of having one of the bedrock principles of the national strategy be related to equity and inclusion. Recognizing the realities of caregiving, and making that front and center, was really important. But also, in ensuring that the national strategy wasn’t just a strategy that didn’t include the stories and the leadership of diverse family caregivers. 

[00:23:22] So, it’s really critical that we are not just using data without the lived experience in context and leadership of family caregivers that cut across these communities, and so that, that’s really critical if we’re gonna build a movement that’s responsive to everybody. 

[00:23:40] Dannelle: It is such good work. Jason, what’s next? What’s going on? [Laughs] What else do we need to talk about? 

[00:23:49] Jason: Yeah. So, for us what’s next is making sure that this strategy doesn’t sit on the shelf. So, we’ll be partnering with a number of organizations that cut across patient advocacy, caregiving, aging, disability, to drive implementation. That’s called The Act on RAISE campaign. It’s a campaign that’s focused on, accountability. The fact that we have this strategy, what are we doing to implement this strategy? What are we doing to continue the work of ensuring that there’s federal leadership in support of family caregivers? My goal is for every iteration of a national strategy to be better and bigger and tied to better and bolder outcomes, that are really moving the needle for family caregivers. 

[00:24:39] Dannelle: Jason, thank you so much for the work that you do and for joining us today on The Caregiving Soul. 

[00:24:48] Jason: Thank you so much for having me and for everything that you do to bring visibility to family caregivers. 

 [00:24:53] [Music] 

[00:24:56] Dannelle: Thank you for joining our conversation with Jason. As we become more aware of the significance, challenges and value of family caregiving, we recognize the need for better support and resources for people and care partnerships. By elevating family caregiving into a greater public consciousness and discourse, policymakers and organizations such as NAC can create meaningful change that improves the lives of caregivers and those we care for. 

[00:25:31] This includes developing more caregiver friendly workplaces, creating supportive policies and programs, and investing in research to better understand and address the needs of caregivers. The visibility of caregiving in media and the public at large can help build a more compassionate and equitable society that values and supports the vital role of family caregiving. 

[00:26:02] Check out our show notes to connect with and follow Jason and the National Alliance for Caregiving. 

[00:26:09] Every episode of The Caregiving Soul has a page on where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links.   

[00:26:21] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod.   

[00:26:38] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts.  

[00:26:54] And remember, the right care includes care for you. 

[00:27:05] [Music Ends] 

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