The Caregivers Crisis

Andrew Deerin

CAN is a nonprofit organization providing education, peer support and resources to family caregivers across the country free of charge.

 

SIGNALCAST: Welcome to SignalCast, the podcast from Signal Group. Signal is a bipartisan, modern public affairs firm located in Washington D.C. I’m your host, Andrew Deerin, Creative Director at Signal.

SC: There are almost 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. Family caregivers range from parents of children with significant health needs to the families and friends of wounded soldiers, a young couple dealing with the diagnosis of MS, adult children caring for parents with Alzheimer’s disease. To say the role of the family caregiver is challenging is a massive understatement. The burden carried by family caregivers is enormous and at times overwhelming.

SC: CAN, the National Family Caregivers Association, is a nonprofit organization providing education, peer support and resources to family caregivers across the country free of charge. Joining us today in the SignalCast studios is John Schall, CEO of CAN. He’s led the organization for the past seven years and has spearheaded tons of important programs supporting family caregivers worldwide. Welcome John.

JOHN SCHALL: Thank you, Andrew. Great to be with you.

SC: So I guess let’s start off. What is the scope of caregiving in the United States?

SCHALL: Well, when you think about it, it’s almost everybody you talk to is now a family caregiver. It’s almost that all of your friends, all of your work cohorts, all of your colleagues are doing something like family caregiving. Either caring for an elderly loved one at home, or maybe they have a child with autism. In fact, now two out of every five adults in the United States are family caregivers and frankly, that’s a big increase from just a few years ago. So why is that happening? Well, certainly as America ages, and we have a lot of older people.

SC: That are boomers, baby boomers.

SCHALL: Sure, a lot of baby boomers now are at retirement age. So they’re either caring for their elderly parents or now they’re needing caregivers themselves. But it’s not just on the aging side with diseases like Alzheimer’s exploding exponentially. Even if you look at childhood diseases like autism. Greatly more kids with autism than we saw 10 years ago. So there’s just a lot more need for family caregivers and it seems like every one of us is now in some sort of family caregiving situation.

SC: So who are caregivers and what are some of the implications for them in terms of cost, employment, their health?

SCHALL: Yeah, let’s talk about it. Since so many of us are family caregivers, what we see is that it does take a tremendous toll on your own health as a family caregiver. It costs a lot of money and it has an impact on your job. So let’s start with health for a minute. You know, it’s the sheer stress of the role of being a family caregiver, actually makes family caregivers, not the patients, but family caregivers themselves, sicker than people who are not family caregivers. So that stress of the role can put you twice as likely to have diabetes, twice as likely to have high blood pressure and a huge part of that is depression. In fact, if you’re a wife caring for your husband, you are six times more likely to have depression than a non-caregiving wife. So it takes a tremendous toll on your own health.

SCHALL: Financially as well. It takes a big hit on the pocketbook. Genworth Financial has estimated that on average family caregivers are paying $10,000 a year out of pocket for family care giving expenses that aren’t covered by insurance. So what that might be, if your mother is now incontinent because of her Alzheimer’s and needs Depend or something like that and insurance doesn’t cover that. Medicare doesn’t cover that. It’s coming out of your pocket. Those blood pressure monitors, where now you need need a few hours a week for someone to come in and help. All that you pay for. Insurance doesn’t cover it.

SCHALL: And then on the job too. There’s a huge component to this that people don’t realize. Most family caregivers are actually working and working full time. So it isn’t just grandma and grandpa down in Florida caring for each other when they’re sick. Yeah that happens, but most of us are actually working. In fact, most are in the prime working ages between 25 and 54. So it’s really taking a big toll. It’s having a huge impact on your job.

SCHALL: 60% of these caregivers will say that they’ve had to change something in their work environment. Do fewer hours, take time off because of their caregiving responsibilities. In fact, three quarters of them are taking more time off. About the average of seven hours a week. So yeah, it’s a big deal trying to juggle work and caregiving. So there’s no question it has a huge toll on health, finances and on the job.

SC: So what services does CAN provide to help support these caregivers that are juggling all these various responsibilities?

SCHALL: Well, we’re the nation’s leading family caregiving nonprofit organization and so if you’re a real life caregiver somewhere in the country and you’re looking for help, education, resources, how to do this, because frankly none of us is born knowing how to do it, that’s what we’re here for. Family caregivers are trying to handle everything. They’re handling medication, they’re handling finances, they’re handling doctor’s appointments and then they’re dealing with their own exhaustion and depression and stress and burnout. So because of that we’ve realized there’s a tremendous need for family caregivers to very quickly get the help they need. So we have just launched, and we’re very proud of this, caregiver help desk nationally. And what this is, is a support center staffed by professionals that any caregiver anywhere can contact us live by phone, by live chat, by email, and do it for free. And we want to be able to help them right at the moment with the types of help that they need.

SC: What kind of stuff are you seeing people reaching out to you about? Give us a couple of examples of how a caregiver might use the contact in real life.

SCHALL: It’s a good question and actually makes it a bit challenging for us because when you think about it, family caregiving is kind of like life itself. At some point or another you need everything from A to Z. So we certainly see a lot of questions about insurance. We see a lot of questions about, “Now I think I need to hire someone to come into the home to help me do this.” Or, “I may need to find an assisted living facility for my mother down in Florida, even though I live in New Jersey.” And then sometimes it’s just the family caregiver really doesn’t know what they need, but they’re just overwhelmed. They just need somebody to talk to and frankly that is being a big percentage of them as well. So we have to be prepared to kind of handle everything. Give you a support center, or answer insurance questions, or talk about dementia or just listen to you because you’re feeling overwhelmed and angry because you didn’t sign up for this. Or guilty or depressed, and just kind of talk it through with you.

SC: So CAN has taken on a pretty significant role working to launch a nationwide community care core. Can you share more about what that? Talk me through what the community care core is.

SCHALL: Yeah, community care core is very interesting. So here is what I think is just a giant leap forward for family caregivers across the country. For the first time, the federal government, now realizing how important the role is that family caregivers face and the challenges that they’re up against, has decided to create a national program where we put supports in place at the local level by using volunteers who can provide non-medical assistance to family caregivers or elderly people or people with disabilities. We were very fortunate, very proud, that CAN and our team of three other national organizations, won the contract to implement this nationally just a few months ago. So starting in the spring for the first time, we will have at least $3 million each year to put into local communities to create some wonderful local models using volunteers to deliver this nonmedical assistance.

SCHALL: We’re particularly asking locals to think creatively, think innovatively. They know best what might be the volunteer services they need in their community. Might be meal preparation, it might be companionship to overcome isolation, might be teaching seniors how to use technology. Who knows? There are a hundred different things that volunteers could do and we want locals to think about that and realize for the first time there’s funding for them to put that in place. And then our hope is after the course of these five years, we figure out which ones work best and we’ll have models really for the entire country.

SC: That’s great. So I know you had mentioned that there’s a lot of insurance questions that sort of come across the help desk. Obviously I found it interesting that you never really think about how much people come out-of-pocket for the things that you had mentioned. So are there key policy or legislative issues on the horizon that are going to impact caregivers?

SCHALL: Well there are a lot of them. Some good, some bad. Actually the good news really on the out-of-pocket expenses side, is now there is serious legislation, probably will get through Congress, to limit the out-of-pocket expenses for people on Medicare. It’s interesting, right now there is no out-of-pocket limit and you can end up spending several thousand dollars out of your own pocket every year, even as a Medicare beneficiary. So that’s the good news. I think we’ll get somewhere on that.

SCHALL: The other is… and here I think people just have to pay attention. There’s a lot of talk about how we make sure that prescription drugs, for instance, aren’t too pricey. But there are a lot of ways of going at this that can have exactly the wrong effect, and sometimes can actually hurt patients and their families. So it’s something we have to be very, very much aware of.

SCHALL: People talk about, well, you know, we could save a lot of money if we were able to import drugs from Canada. May well be true as long as all those drugs are safe. But if they’re not, all of a sudden we could have some adulterated prescriptions or some just weak prescriptions that don’t work for our families and none of us wants that. So it’s one of these things that we have to watch a lot of these proposals now, really think them through, to make sure they’re having the right effect and not some negative effect on patients and families.

SCHALL: And with caregiver help desk, we created a toll free numbers that people can call directly and get a live response. So that number, (855) 227-3640 for caregiver help desk. (855) 227-3640 and of course anyone can also get it through our website at caregiveraction.org.

SC: Great. All right, well that will do it for today’s show. My many thanks to John Schall from CAN for joining us today and giving us some really great insight into the important work CAN is doing for the millions of family caregivers out there. If you’re one and could use some help, please check them out on the web caregiveraction.org. For our entire production staff, I’m Andrew Deerin and we will see you next time.