We talk with a long-time mental health service provider who works with vulnerable citizens about the state of mental health care, progress made in recent years and the way forward.
A new study from the Pew Research Center finds that 39 percent of U.S. adults are caring for a family member, up from 30 percent in 2010. Kojo looks at how a growing aging population and other factors are putting more Americans in the role of a family caregiver. He speaks with experts about the tools and resources available to the so-called “sandwich generation”–those caught between the needs of their aging parents and growing children.
- John Schall CEO, Caregiver Action Network
- Susan Reinhard Senior vice president for public policy, AARP
- Susannah Fox Associate Director, Pew Internet & American Life Project, Pew Research Center.
MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your neighborhood with the world. It's the last thing you want to imagine, your parent, aunt or neighbor suffers an accident or is diagnosed with a chronic illness. Before you've recovered from the shock, a nurse goes through a checklist of everything from prescriptions to procedures.
MR. KOJO NNAMDIAnd once you leave the hospital doors, you've become your loved one's caregiver. A Pew study released today shows that more and more American adults are becoming family caregivers, meaning they're providing hours of unpaid care to a family member, friend or neighbor, and this is just the beginning. As the baby boom generation ages, health experts warned that we're facing a silver tsunami of aging adults in need of long-term care, which means that more middle-aged adults who may already be caring for their own children could also be providing health care and financial support to their parents.
MR. KOJO NNAMDIIt's why many call this the so-called sandwich generation. Here to explore the issue with us is Susannah Fox. She's an associate director at the Pew Research Center. She studies the cultural shifts taking place at the intersection of technology and health care. She also authored a recent report on adult family caregivers. Susannah Fox, thank you for joining us.
MS. SUSANNAH FOXThank you.
NNAMDIAlso in studio with us is John Schall. He is CEO of the Caregiver Action Network. John Schall, thank you for joining us.
MR. JOHN SCHALLIt's a pleasure to be with you.
NNAMDIAnd joining us by phone is Susan Reinhard, vice president for public policy at AARP. Susan Reinhard, thank you for joining us.
MS. SUSAN REINHARDThank you.
NNAMDIYou too can join us that -- the conversation that is by calling 800-433-8850. Are you caring for a family member? Are you in the position of caring for more than one family member? The number again, 800-433-8850. You can send us email to email@example.com, send us a tweet, @kojoshow, or you go to our website, kojoshow.org, join the conversation there. Susannah, according to the study, the Pew Research Center is releasing today or released today more adults are identifying themselves as family caregivers.
NNAMDIAs many as 39 percent of U.S. adults are caring for a family member, up from 30 percent of adults in 2010. Who are these Americans, and where do they fit in the nation's demographics?
FOXOne of the really interesting findings is that it seems to touch almost every demographic group. Men and women are equally likely to report being a caregiver. It cuts across income and education lines. It seems to be a little bit more concentrated among people who are between 30 and 64 years old, but there's still people in their 20s and census data shows there's people on their teens who are caregivers.
NNAMDIYou went into this study looking at how caregivers use technology and online resources. Why did the sharp increase in family caregivers end up being one of the more startling statistics in the study?
FOXWell, since I often look at the Internet and the social impact of the Internet, that's really where my questions were going. And frankly, we stumbled on this major economic and demographics story. We're the first to be recording what we think is the age wave hitting our shores and also a result of the economic downturn where if people had a lot of their wealth and savings tied up in their home and they lost the value of their home, they don't have anything to go when it's time for long-term care.
NNAMDIStarted looking for one thing and came up with a startling discovery, if you will, in another area. John, many Americans probably care in some way for a child or a parent. How do you define what makes someone a family caregiver?
SCHALLWell, actually, it's a very interesting question because a lot of people who are family caregivers don't self-identify as a family caregiver. But in fact, if you're one of those four out of 10 Americans who's helped providing care for a loved one with some chronic condition, that's an elderly loved one or a child with special needs, then you're a family caregiver. But getting people to that first notion to identify themselves as a family caregiver is very tough, but it's very important for us because until you've identified as a family caregiver, it's hard to reach out for help and resources that are available to you.
NNAMDIMost family caregivers probably did not expect to take on the primary role of caring for a family member or a friend, so in what kinds of circumstances do people find themselves taking on this role?
SCHALLWell, there are almost as many different circumstances as there are the tens of millions of family caregivers. Our surveys have shown that about half the time you feel like the family care-giving role was thrust upon you. It came suddenly. In about half the time, you feel like it happened gradually. So all of a sudden, if you're an adult with a parent who's now suffering from Alzheimer's, all of a sudden you found yourself into a family care-giving role.
SCHALLIf you are a young married couple in your 30s and the wife has just been diagnosed with multiple sclerosis, this is a very different life than the two of you planned together, but now as the husband of the spouse with multiple sclerosis, you may be thrust into a family care-giving role. So there are any number of ways people get -- put into the family care-giving responsibility.
NNAMDIOh, several decades ago, that was my situation. I was a single parent caring for kids, and my mom who was living with us who initially came to help me care for the kids developed Alzheimer's, and so we essentially became her caregivers. I guess I was at that point a part of the sandwich generation. Susan, many people may seek caring for their family member as simply their responsibility. What problems can arise when these adults don't recognize themselves as caregivers?
REINHARDYou know, I'm really glad you asked that question and that John raised to begin with. AARP has been working with the Ad Council to get messages out to people who are providing care so that they can start to recognize what I'm doing here is beyond what normally is occurring in families that I am spent -- most of them are working, by the way. Most caregivers are working. And on top of that, they're providing an average of 20 hours a week care.
REINHARDSo they really have two jobs. And when you are trying to juggle everything, you know, you may be helping with bathing and dressing, and you may be helping with shopping and cooking and transportation, and you may be doing these medical-nursing tasks, like giving medications and wound care and things of that sort, then you're doing an awful lot. You are multitasking beyond belief.
REINHARDAnd when that brings with it, although you may love the person you're caring for quite a bit, it also brings stress. It just have to because you're juggling like crazy here, trying to keep all the balls in the air. And that means you don't take care of yourself as much. You don't go to the doctor or nurse for physicals. You don't sleep as well. You're not eating typically as well, and that means your physical condition and your mental and emotional wellbeing is affected.
REINHARDSo we always want to make sure that family members, first of all, realize that they are family caregivers so that they can see that they need to put themselves, just like put your oxygen first or take care of yourself first, so that you can be an effective family caregiver.
NNAMDISusan Reinhard is vice president for public policy at AARP. She joins us by phone. Joining us in studio is John Schall. He is CEO of the Caregiver Action Network. Susannah Fox is an associate director at the Pew Research Center, who authored a recent report on adult family caregivers. We're inviting your calls at 800-433-8850. How do you balance work with family care obligations?
NNAMDIHow has caring for a family member affected your own question of life? 800-433-8850. Or shoot us an email to firstname.lastname@example.org. Susannah, they're saying that middle-aged people today are what we call the sandwich generation. Their grown children still live at home because financial opportunities these days tend to be fewer and far between. Meanwhile, they're caring for their aging parents. How is this all changing how we think about care giving?
FOXWell, it's bringing it home in a new way. You know, actually, Susan, who helped start the Caregiver Action Network, probably has the quote that sticks most in my mind. She has said people used to die quickly. Thank goodness they don't. I want to hasten to add. It's great to have people around and have extended life, but often, people are sent home medically fragile, and it falls to people in this sandwich generation who still have responsibilities at work and responsibilities with kids to now fill in with complex medical care at home.
NNAMDIJohn, do you think our conception of care giving is changing or has changed as a result of this?
SCHALLYeah. There is no question it has. There has been a cultural shift. And you see the people respond very different to the notion of care giving today than they did perhaps 10 years ago. Twenty years ago, perhaps nobody really was talking about it. We didn't really have the term family care giving. We called them unpaid care, informal care. Well, there's nothing informal about it.
SCHALLThe last two years, people have definitely recognized the importance of the role, and it's one thing that you actually see come out in the very important findings from the Pew Research Center. More men self-identifying as family caregivers.
SCHALLI think that speaks to the cultural shift tremendously in a way that really wasn't the case a few years ago. So definitely, there has been a real change in how we as a society look at the family care giving role, finally getting some of that recognition. We need more, and frankly, we need more especially from the health care professionals. When I think about the fact that family caregivers are the ones who by and large are managing the medications for their loved ones, doing those important care giving roles, I think that family caregivers should be identified in the medical records of the patients.
SCHALLThe patient's chart should actually reflect who the family caregiver is so doctors and the health care professionals know who has to be a full member of that health care team.
NNAMDIWhy do you think there's more gender balance among those who identify as caregivers today?
SCHALLWell, I think a couple of things are happening. Clearly, some of it is more men have come into the care giving role, but some of it too is more men are now willing to self-identify as family caregivers. And I don't think that was so much the case before. Also, a big switch, again, not nearly as much as it needs to be, but a switch we've seen in recent years, is what's happening in the workforce that some of the stigma of being identified as a caregiver when you're an employee in your job is beginning to wane a little bit, thankfully.
SCHALLI think years ago, it was a real stigma to be thought of as a caregiver, and the employer would think that they may have some problems in the employment situation. But big employers are now realizing that caregivers are terrific employees. They want to give them that kind of flexibility to do their care giving responsibilities because actually to lose those good employees and recruit and retrain new employees is actually more costly to employers.
SCHALLSo a little bit of the stigma in the workforce associated with care giving is beginning to wane, and I think that's why you're seeing more men being identified as family caregivers.
NNAMDIOnto the telephones. Here is Molly in Washington, D.C. Molly, you're on the air. Go ahead, please.
MOLLYHi, Kojo. Thank you for having this topic on the air.
MOLLYMy name is Molly. I'm a social worker in Washington, D.C. I don't have a large income. I'm an independent single person. I'm -- siblings -- my siblings are -- I have two older brothers who are chronically unemployed and have sort of given up on their coming into the employment industry anytime in the near future. My parents are very active, and they're almost in their 80s. And I don't care for them per se right now, but I anticipate that going to be having to care for them in the near future.
MOLLYAnd I -- basically, I'm looking for your insight, to your comments about I would like to embrace the caregiver role, but I sort of feel like I run into a lot of pride. And my parents don't really feel like, you know, that's an issue. They kind of laugh it off. And I sort of feel this resentment that I keep at bay because my brothers aren't gonna be able to help, and I'm only the girl. And I don't know how much that fall -- will fall on me. And so I feel very conflicted, and I just like to know if you hear that a lot or what insights you might provide me. Maybe I need to go to therapy, I don't know.
SCHALLOh, we hear it constantly. It's one of the most frequent themes we hear from family caregivers across the country. The conflicting feelings are extremely normal with your parents in kind of their resistance to want to be care recipients. I think one thing important to remember is always that, you know, the relationship evolves and nobody needs complete care across-the-board all at once necessarily.
SCHALLIt's worth having the conversation with your parents that really talks about in the way that they wanna talk about it, which is, you know, we wanna make sure that you're staying at home as long as possible, as safely as possible as you want to. And there may be some areas where they need help and some areas where they're not going to need help or won't need help for years. We have a tool on our website called the Independent Living Assessment. Very easy to do.
SCHALLIt can be done by the loved ones or the caregiver themselves and actually figure out those areas where they may need help. And so that you can actually just focus on those areas where there may be some functional limitations that they need to have addressed as opposed to trying to take on the whole issue all at once, which is freighted with the whole psychological situation in the discussion that people don't necessarily want to have.
NNAMDIAnything you'd like to add to that, Susan Reinhard?
REINHARDYeah. First of all, I wanna commend you for even starting to think about it and prepare yourself for what might be needed. I don't know how much flexibility you have in your job as a social worker, it sounds like, but trying to get yourself ready -- and I appreciate what John is saying -- to have discussions talking, the big, important talks. And there's advice on the website. It sounds like this Independent Living Assessment tool is good.
REINHARDAnd AARP has a website, www.aarp.org/caregiving, where you can dialogue with other people, other potential caregivers, people who are already caregivers either experiences, their ideas, tips that they can share and become part of a community. You can even post questions to experts who will get back to you. So, again, I just wanna commend you for even thinking about what this role might be like for you in the future.
REINHARDAnd don't give up on your brothers. You know, they -- people change over time, and they need to figure out what part of this they can play, what role they play in this.
NNAMDIMolly, thank you very much for your call.
MOLLYThank you very much. It sounds like sort of meeting them where they are and reaching out sort of flexibility. Thank you so much.
NNAMDIGonna take a short break. When we come back, if you have called, stay on the line. We will get to your calls. If you haven't called yet, the number is 800-433-8850. Where do you find the information you need about things like medications, procedures and health tracking? You can also send us an email to email@example.com, or go to our website, kojoshow.org, ask a question or make a comment there. I'm Kojo Nnamdi.
NNAMDIWelcome back to our conversation about a growing generation of family caregivers. We're talking with John Schall. He is CEO of the Caregiver Action Network. Susannah Fox is an associate director of Pew Research Center, who studies the cultural shifts taking place at the intersection of technology and health care. She authored a recent report on adult family caregivers. And Susan Reinhard is vice president for public policy at AARP.
NNAMDIYou can call us at 800-433-8850. Susannah, health experts warned of a looming silver tsunami of aging baby boomers. How does that factor into the rise in family caregiving?
FOXWell, what we see in our study is that three quarters of people aged 65 and older have a chronic condition. And many of them are able to manage it on their own. Some need help. And that's why we start to see this continuum of care that John and Susan have talked about where people start to step into the role of helping their loved one manage this condition. And it's just gonna get bigger and bigger. We're looking forward to having 19 percent of the population be 65 and older by the year 2030. So this is a national issue that we really need to face.
NNAMDIIndeed, John, the Social Security agency says that each day, 10,000 baby boomers will turn 65. How prepared do you think the health care system is for the incoming wave of aging adults?
SCHALLWell, that fact is it's not very well-prepared at all. There's no question about it. You know, we are seeing an exponential rise in the number of cases of Alzheimer's. That's gonna continue. That plays a huge burden on family caregivers. So across the board, you're really seeing that the health care system is now prepared. And, in fact, I don't think policymakers have yet really keyed in on the tremendous role that family caregivers play.
SCHALLYou know, if you look at the economic value of all those hours of care that these family caregivers across the country are providing, in doing fairly important stuff, managing care, you know, transporting to doctor's appointments, getting the loved one out of the bed and into a wheelchair, I mean, pretty important stuff, if you add that up, and Susan knows these numbers extremely well, you know, $450 billion a year in the value of what family caregivers are doing.
SCHALLTo put that in prospective, you know, if you take everything this country pays on nursing home and in-home care services, this is twice as much as that. This is more than all states' Medicaid funding combined. If all family caregivers in the country went on strike tomorrow, you know, we would never do it, we would never do that to our loved ones, but if we went on strike tomorrow, there's no way the nation could fill this gap. So there's no question as a health care system.
SCHALLWe really are not prepared for this wave that's coming down the pipe. And it's really putting a tremendous burden on family caregivers across this country.
NNAMDIThat's a day of absence that would cripple the economy for you. I'm pretty sure. On to the telephones. Here is Tony in Bethesda, Md. Tony, you're on the air. Go ahead, please.
TONYHi, Kojo. As someone that's living in this right now as a caregiver and part of the sandwich generation -- I've got a 2-year old, a 5-year old and a 93-year old father, 86-year old mom -- I can tell you two things that are a benefit to us. And politically, I hear that these that may be done away with is the AARP supplemental insurance that my parents use. And they've had cancer (unintelligible) cancer and other costs that would've eaten away their equity on their home through the years.
TONYAnd I really, you know, believe that, you know, they would not have been able to have the quality of life that they have and the peace of mind that they have without that insurance. And I'd like to put in a plug for that that anyone that has elderly parents, call AARP and talk to them about getting their supplemental insurance. Now, I guess the other thing I could talk about is I hear about, you know, having choice for the elderly.
TONYYou know, my dad has the onset of dementia, and the worst thing you can do -- the cruelest thing you can do for elderly parents or elderly people is to give them choice in insurance because they need the help of their children. They need the help in order -- making choices because they are in a vulnerable position at that age.
NNAMDIThank you very much. Care to comment on that, Susan Reinhard, in addition to the commercial that he did for AARP?
REINHARDHi, Tony. Well, it's not that as if AARP is walking away from supplemental insurance. I think you might be referring to policy debates in Washington which are, you know, debates at this point. And I do think that you're awfully right, people need that sense of calmness that they can manage the finances if some catastrophe hits. And we know that that's very, very important to not only people who are 50 plus but over, you know, those who are trying to help them.
REINHARDAnd that is, you know, certainly a high, high priority for AARP, I can assure you that. And I also appreciate that you are juggling such an intergenerational household tier. And I think you heard the website I offered earlier that if there's anything we can do to help you, you know, share ideas and join us in our community.
NNAMDIThank you very much for your call, Tony. We move on to Denise in Chicago, Ill. Denise, you're on the air. Go ahead, please.
DENISEHi, Kojo. Thank you so much for a great show.
DENISEI started working with family caregivers in 1990. And my experience is that typically, there's one family member who steps up to provide care. What I'm fascinated by is this idea that 40 percent of U.S. adults are in a caregiving situation. And I'm wondering, is it going to change in terms of who actually handles the responsibilities? Do you think that family members are going to work together more in the future simply because they have to?
SCHALLIt's an excellent point, and I'm glad you brought it up because I think that's exactly what's going to happen. And we were actually seeing movement in that direction. Some of the resources on our website at caegiveraction.org talk about that family dynamic. And I think the one you described is exactly what you traditionally seen, that one child kind of steps up and takes the lead role, sometimes the only role.
SCHALLI think what we're now seeing is because there is just so much more involved with the family caregiving responsibility that there is beginning to be a little bit more sharing, and we have some resources in how to have that conversation with the other family members to bring them into it. Also, I will say that some companies out in the marketplace have been very smart about this. You know, they see that family caregiving now is a huge part of what's happening across the country.
SCHALLAnd they've been putting in place some tools to help you online work out programs with your family members on -- and other loved ones who can help in that family caregiving role to share those responsibilities, and they're actually very, very powerful tools. I think of Lotsa Helping Hands out of Massachusetts which does this nationally. Saturing is another company that does it.
SCHALLAnd some of these are of extremely powerful tools that help bring others into those roles to share the responsibilities and move away from that just one child being able -- being having to shoulder the entire responsibility.
FOXI think another thing that we see is that people are bringing different skills to the caregiving role. And as information becomes more of a currency in our society, people who are great at retrieving information, who are great at co-leading a lot of information and helping people make better choices are gonna have a place at the bedside along with the person who can make a great chicken soup.
NNAMDIIndeed, the focus of the Pew study is on how people are using technology and resources online to learn how to care for their family members, how to become, in many cases, a trained nurse on the spot.
FOXYeah, it turns out that caregivers need a lot of on-the-job training, and they're not necessarily getting it from clinicians or from hospitals that discharge, and so they're going online. And a lot of this is they're training each other. They're getting a lot of information from each other if they know about it. And I hope that our report can shine a light on this.
SCHALLAnd that's the hugely important part, if I can jump in there, if they know about. And I'm so glad that Pew study brought this out because family caregivers are, in fact, very tech savvy. But they will go online to search for information about Alzheimer's, for instance, if they are caring for someone with Alzheimer's. But you don't necessarily think to look for resources for you as a caregiver.
SCHALLOne thing we did on caregiveraction.org is take many of those new technologies and try to sort them through from the standpoint of the family caregiver and put them in categories of what they can be useful for so that a family caregiver can go to our new plugged-in technology site, part of our website, and see those technologies that can help them.
SCHALLBecause the fact is, if I did not know, and I did not know that there was an app that would help me in Washington D.C. monitor whether my dad took his asthma medication in Michigan, I wouldn't know the Google for that. But if you do know that they're there or we put them in one place for you, then you can sort through those and actually be able to use those technologies.
NNAMDISusan Reinhard is a practicing nurse. You practically -- you literally walked in the shoes of healthcare professionals. What are the difficulties from the hospital's perspective in ensuring that patients and their family members get the right information about their care?
REINHARDWell, thank you for that question. And Susannah's report, which did bring up these complex medical paths that we first put out last fall with the United Hospital Fund. Carol Levine and I at AARP put out a report, which captures that almost half of all family caregivers are doing what we would say nurses and doctors used to formally do, and as Susannah just said, with virtually no training whatsoever.
REINHARDSo from a hospital's perspective, and I have talked with nurses and pharmacists and physicians, et cetera, they really feel pressure. They don't have a lot of time. But they also have not been seeing this as their role to do the teaching that needs to be done for both the person and the family caregivers -- there's probably more than one involved -- and yet we know that we have new policies that are going to and already are punishing or giving penalties to hospitals for re-admissions.
REINHARDAnd so I think it's an opportunity for healthcare professionals supported by hospitals to say, look, we got to really change the way we're doing this. We cannot be handing a list of things that people need to do, including colostomy care, packing sterile wounds, you know, putting sterile packing into wounds. I'm talking injections, ventilator care as well as 10 or more different medications that are likely to have an interaction effect just because when you take 10 or more different medications, you probably will.
REINHARDAnd the family caregivers are saying, you know, we really don't know where to go for this help. They need to know that they can and should ask their doctors, their nurses, their pharmacists, and expect to get that help, not, oh, isn't it nice that you gave me this information, but rather, you better give me this information. I think it borders on malpractice to send people out of hospital without the knowledge and the skills to do what they need to do.
NNAMDII know Michelle in Manassas, Va. cannot wait to get in on this part of the conversation. Michelle, you're on the air. Go ahead, please.
MICHELLEYou read my mind, Kojo.
MICHELLEYes. I'm a case manager in Northern Virginia. Part of what I do is discharge planning. And to address the woman who was just speaking, yes, you're right. That is a problem. And we are really stuck in a catch-22 because, as you mentioned, there is no -- we are under tremendous pressure to discharge the moment the patient is stable. And we have to begin teaching the moment they're admitted for the planned discharge.
MICHELLEHopefully we know what the plan is. Sometimes that's evolving as they're in. And it is overwhelming for the family. I have elderly parents. I'm not yet living the sandwich life. But every day, I meet families that are in that position. And with compassion, I can see the difficulty. A lot of people look to us and expect us to be able to take over. And hospitals are disarmed from being able to do much now because of policy.
MICHELLEAnd I would just encourage family members to prepare ahead of time. As much as your parents will let you discuss, prepare ahead of time because this day will come. And it is not -- it is the family's responsibility primarily. And then the medical care system is part of that picture, but that doesn't -- we are not the primary. And there is just so much broken. I can even begin to go into all of it. But one thing...
NNAMDII do understand.
MICHELLEI just want to mention one thing.
MICHELLEThat the issue that I find so many families are shocked about is with Medicare, you have -- there are two types of admission to the hospital, observation and inpatient. Medicare will not pay for any transition to rehabilitation, whether it's a skilled nursing facility or acute rehab facility. If your family member is admitted in observation status, patients and family members don't even know about this.
MICHELLESo if they're admitted inpatient, the law states that the patient has to be three overnights. So even if you're three overnights and you're considered observation status, that doesn't qualify. There is some goings on in -- with the lawmakers to change this stipulation, change this...
NNAMDIBut as we said earlier, that's still in the stages of debate. I'm sorry for purposes of time. Michelle, thank you very much for your call. We're gonna have to take a short break. But before we do that, here's an email we got from Sean, (sp?) who says, "Can the guest please comment on the job opportunities for primary caregivers? My mother has been taking care of my grandmother, who is quadriplegic with MS for the past five years.
NNAMDI"My mom has been unable to find full-time employment due to the erratic schedule caring for my grandmother. The daytime in-home nurses, CPAs and assistants are unreliable and can call out at a moment's notice, not to mention the workforce is not very strong. Are there any advice or resources you can provide? Do others have this issue?" John, AARP, and, Susan, AARP reports that one in five middle-aged workers expect to take time off for caregiving in the next five years.
NNAMDIHow many Americans are there, like Sean's mom, who are actually trying to do the balancing act of work and caregiving, or finding work and caregiving, and how do they pull it off, starting with you, John?
SCHALLThere are a lot of them. The data show that six out of 10 of those family caregivers are in the workforce. And so they're trying to make it work through flextime and arrangements with their employer and telecommuting, et cetera. It is a very difficult juggling job. As Susan said at the beginning, you're doing, on average, 20 hours of caregiving in addition to your full-time job. So it's -- there's no question about it that it's a huge factor.
SCHALLEmployers are realizing it as well that there's probably $50 billion worth of costs to employers from caregiving expenses. Some of it is absenteeism, and some of it is increased health care cost of caregivers themselves. And that's why employers need to address this, not to get rid of caregivers as employers -- employees -- that's exactly the wrong thing to do, they're terrific employees -- but to take those issues head-on.
SCHALLWe wanna make sure that the caregivers' own health is being taken care of so those health care costs do not go up from the stress of the caregiving role, to put flexibility in the workforce.
REINHARDI just wanna add, we have a new report out called "Keeping Up with the Times: Supporting Family Caregivers with Workplace Leave Policies" because, as John said, employers are starting to get a little more aware of this because they themselves are caregivers, bottom line, the boss is, all the direct reports are. This is becoming just the new normal is what we call it. But, you know, as of now, 40 percent of people who are working have no paid sick leave even for themselves, and 80 percent of people with -- who are low-age earner -- wage earners have no sick leave.
REINHARDAnd so we really are advocating for paid leave insurance, for sick leave. Our policies have been stagnant. Even the Family and Medical Leave Act leaves out 60 million people, and that's 20 years old, that policy. We have to update our policies to manage what you are very well explaining on the show.
NNAMDIGot to take a short break. If you have called, hang on to the line. If you haven't yet, you can call us at 800-433-8850. Do you think health care professionals provide chronically ill patients and their family members with enough information and resources about their care? Give us a call, 800-433-8850. I'm Kojo Nnamdi.
NNAMDIWelcome back. We're talking about a growing generation of family caregivers with Susannah Fox. She's an associate director at the Pew Research Center. She authored a recent report on adult family caregivers. John Schall is CEO of the Caregiver Action Network. And Susan Reinhard is vice president for public policy at AARP. Back to the telephones now. Here is Gloria in Washington, D.C. Gloria, you're on the air. Go ahead, please.
GLORIAGood afternoon, Kojo. This is an outstanding program. Thank you so much for covering this issue. You posed earlier about what's the impact of a family member becoming the primary caregiver. As an only child for 11 of the past 13 years, I was my parents' primary caregiver, and I still haven't recovered. I haven't recovered financially. I haven't recovered with respect to my career. And health-wise, I'm doing well, but I still think that I'm dealing with a lot of the aftereffects.
GLORIAWith that said, I had a question for -- two questions for your guests, and then I'll listen. The first one is, is there anything that Medicare can do, or are there plans for Medicare to essentially help support family caregivers? And then the second is, are there models that you're aware of or programs that are community-based, whether it is a group of caregivers deciding that they're going to share staffing for their parents or making sure that they have not necessarily technology things available, but things that are human capital-driven? Thank you.
NNAMDIAnd, Gloria, I recognize your voice and know that you happen to be the parent of one child who may one day ultimately be your own caregiver, correct?
GLORIAOh, yes, and we're having discussions about that now.
NNAMDIExactly right. I guess you are. But allow me to put John Schall on this.
SCHALLWell, that's good planning ahead with your child. That's the way it should be. I wish Medicare would move more into this realm, and I'll let Susan respond to that too. But in terms of models, I actually would like to point out one thing. About three years ago, Congress did enact a veterans' caregiving program. I think it's a tremendous model for the federal government. Typically in the United States, we have not provided stipends to family caregivers.
SCHALLOther countries, in fact, do so, but the United States is a little bit behind that curve. But a few years back, we did create a veterans' caregiving program for veterans returning post-9/11 who need a family caregiving situation, and there is, actually, training and stipends available to their family caregivers. Our organization, the Caregiver Action Network, helped put some of those program materials together, and it's a terrific program.
SCHALLI think it needs to be expanded to veterans before 9/11. There's no reason for that arbitrary cutoff, and I just hope everybody will now look at this program and see what a tremendous model for supporting family caregivers in this role. In communities, we do see a lot of things like the Village's Movement that started in Boston and has now spread throughout the country where people have gotten together in their communities to share resources and to share support, extremely successful in many, many, many ways.
SCHALLAnd as I mentioned earlier in the program, some of these online support networks that companies are putting together where you can build a community of supporters to help you do that family caregiving responsibility.
NNAMDIGloria, thank you very much for your call. Anything you'd like to add for Gloria, Susan Reinhard?
REINHARDNo, just that it's true that Medicare is really not perfect on long-term care. It really is acute care. But we are hoping that at least we can get them to do more programs to help people who are leaving a hospital, for example, get the information that they need around at least the technical things and then directing them or helping them find resources in the community, as John has said. And there are -- if you call your local area agency on aging, that can be -- they can be helpful in pointing out where you might find these forms of help.
NNAMDIGloria, thank you for your call. Here is Maya in Fairfax, Va. Maya, your turn. Hi, Maya.
MAYAYes, Kojo. Hi.
MAYAI work with people every day and talk to them about long-term care insurance, and invariably I get older people, older couples say that our children are gonna take care of us. We took care of our parents, so it is their term. They are obliged to take care of us now. And they just do not hear any, you now, anything else thinking that it's just a matter of me trying to sell them long-term care. Is there a way to educate the older generation or those who are in the right market now to consider long-term care to understand that the economy may not help their younger children take care of them?
NNAMDISusannah Fox, did the Pew study indicate that there is this expectation on the part of children that they will take care of their parents because that's the way their parents said this is done?
FOXYeah. In a previous study that some colleagues of mine did at the Pew Research Center, 47 percent of adults do expect to be a caregiver in the future for an aging parent. But, gosh, that leaves half who don't expect to be a caregiver.
NNAMDIAnd I suspect, Susan Reinhard, that there is a lot more involve in long-term care than some children of adults or adults can really handle themselves.
REINHARDAre you talking about the older person themselves or the caregiver?
REINHARDRight, right. I think John made a good point earlier that for some, this is a slowly evolving situation, for others, it can be overnight because of a stroke or a hip fracture or any number of things that can happen. And so, you know, reaching out for help is what our message is. First, realize what the situation you're in or maybe in and gather around your friends and neighbors, your own personal support system to help and get on these various websites that Susannah is pointing to.
REINHARDGet technologically out there and connect into communities that can -- even online -- help you figure out specific questions you can raise. Where do I find incontinence products that I can afford? Does Medicaid cover this, that or the other thing? That's really what people are desperately looking for. They need help, and they have to figure out who they can ask the questions to.
NNAMDIMaya, thank you very much for your call. Long-term care, of course, often involving people who do not have people who can take care of them and need somebody who has to be paid in order to do that. John, the Pew study finds -- we talked about that earlier, women and men taking care just about equally. Family caregivers often report feeling a whirlwind of emotions, some stress, to exhaustion, to grief, guilt. How do you recommend people in this position deal with the feelings that may come from it?
SCHALLIt's an extremely emotionally rough situation. Reaching outside of yourself is the first most important thing to do. You know, even though there are tens of millions of us -- before this program, I used to say 65 million of us across the country, but now I guess with Pew's terrific numbers from today, that seem like more 85 million of us across the country. Even though there are many of us, you feel very isolated when you get into this role.
SCHALLAnd so the first thing you want to do is be able to reach out, be able to sort of express your feelings and hear about others who have been in the same situation. At our website, caregiveraction.org, we have an online forum where people can do exactly that because the first thing is to have that point of connection. But you will go through any number of emotions, and guilt is gonna be a part of it.
SCHALLBut as Susan said at the beginning, taking care of yourself first as a family caregiver is the single most important thing because, look, if something happens to you, who's gonna take care of your loved one? But there are other parts of it that will come into play during that emotional rollercoaster over time. And we have a lot of resources that can help you deal with that, but you will feel all of those things. And one I wanna point out because it's hugely important is depression.
SCHALLFamily caregivers suffer from depression at much higher rates than the non-caregiving population, 2 1/2 times more likely to suffer depression than non-caregivers. In fact, if you're a wife caring for your husband, you are five times more likely to suffer from depression than a non-caregiving wife. So it's very important to watch out for those signs and then to seek help as it happens because it is a very common problem in the caregiving world.
NNAMDIGotta get back to the issue that Maya, the caller, may have raised earlier, Susan, because providing care for a family member can be equivalent to another full-time job. But what about people who cannot do this for their parent or relative? What options do they have to make sure their family member is getting the care he or she needs? Is long-term care insurance one of those options?
REINHARDLong-term care insurance is -- although there is only maybe somewhere between seven and 9 percent of people who are 50 plus that have that, there is a long-term care commission that is starting very soon that is going to be looking at better ways for financing for long-term care. It is very difficult. The $450 billion that John referred to before, something the AARP Public Policy Institute has developed that methodology to show that as a way to get policymakers to better understand what family caregivers are bearing.
REINHARDBecause without them, there really are very few alternatives unless you are wealthy. Nobody really can afford assisted living, regular home care. And so when they do, when you're forced into a situation, you will be spending your money that you have and spend down, we call it, into Medicaid. And that becomes a state federal policy issue of what would be available to you.
REINHARDAnd that means applying for it, and it gets complicated. So that is indeed why there is such attention to this now because people are suffering, we know that this is a growing issue, and it's a financing issue.
NNAMDIOn to Carlos in Washington, D.C. Carlos, you're on the air. Go ahead, please.
CARLOSHello. Thanks for the call. Yes, I just wanna mention I appreciate all of the great information there. I'm involved with a county outside of the D.C. area as a caregiver. And my mother is a part of a medical waiver program, which cater to co-pay the family to keep her in the home as opposed to the -- I think one of the gentleman talked about the veterans or life similar to that.
CARLOSBut it's been very helpful in allowing me to care for her because without that -- before she got into the program because she's incontinent, paying forward depends and paying for pads. And during the donut whole period, I mean, it was $300 for this prescription or that prescription. So all of that has been eliminated now that she is a part of a medical waiver program. They require the family to pay or to contribute up to half of the times. So 12 hours and you pay for 12 hours to cover the whole day.
NNAMDIOkay. John Schall, care to comment?
SCHALLYes. Carlos brought up an excellent point. Some states are doing waivers like this through the Medicaid programs, and it's terrific. Unfortunately, they're not nearly as widespread as they should be and not hitting nearly as many people as needs to be done. But they are terrific programs. And Carlos made a very important point that, you know, unless you're in one of those programs -- and again, they're few and far between -- a lot of those out-of-pocket expenses that come with family caregiving really add up, and you're surprised that they're not covered.
SCHALLIncontinence products are a perfect example. And that's why family caregivers are on average spending 5,500, $6,000 a year out of pocket for family caregiving expenses. It takes a toll.
NNAMDICarlos, thank you very much for your call.
NNAMDIAnd we have time for one more call if you can keep it very brief. Margie in Bethesda, Md., you got 30 seconds.
MARGIEHi there. This is Margie, and I'm geriatric care manager. I don't believe anyone has mentioned the geriatric care managers as an incredible resource for people. Even when people really can't afford the services of an ongoing care manager who knows a lot about the resources in their location, it's really an important and helpful resource for people even it's a one-time consultation. Please go down the website, www.caremanager.org. There's a...
MARGIE...associations of (unintelligible).
NNAMDIThank you very much for your call, Margie. I'm afraid that's all the time we have. Susan Reinhard is vice president for public policy at AARP. John Schall is CEO of the Caregiver Action Network. Susannah Fox is an associate director at the Pew Research Center. She authored a recent report on adult family caregivers. Thank you all for joining us. And thank you all for listening. I'm Kojo Nnamdi.
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