This transcript is lightly edited for clarity. | Get More Webinar Resources
Mary Agnes Carey: Hello and welcome. My name is Mary Agnes Carey, and I’m partnerships editor and a senior correspondent for KFF Health News. Thanks for joining today’s webinar on “Covering Caregiving: Background and strategies for reporters examining the role for families, governments and communities.” As 10,000 baby boomers become eligible for Medicare every day, family caregiving is a common issue in the lives of many Americans. Demographic shifts such as longer life spans and shrinking family sizes may shape the scope and quality of caregiving for our aging population.
Media coverage of family caregiving requires an understanding of the complex and wide ranging issues involved. For instance, who currently takes care of our aging population? What roles should federal and state governments play, if any, in providing, facilitating or funding this care? Are communities and policymakers adequately responding not only to the needs of the elderly but also the growing population of caregivers? What opportunities exist such as family leave policies or tax credits to enable caregivers to maintain financial stability?
We have a fantastic panel of experts with us today to explore these questions and more. Our panelists are Edwin Walker, deputy assistant secretary at the Department of Health and Human Services’ Administration for Community Living; Anna Gorman, a senior correspondent for KFF Health News; Kathleen Kelly, executive director of the Family Caregiver Alliance, National Center on Caregiving and Susan Reinhard, senior vice president at AARP and director of its Public Policy Institute.
If you’re tweeting today, please use our hash tag, #KFF Health Newscaregiving. I’m going to start out with a few questions today, but I encourage you, our audience, to jump in as soon as possible with any questions or comments that you may have. We will have all our panelists bios and presentations along with other very helpful background information available at our website, kffhealthnews.org, as soon as possible after today’s webinar concludes.
With all of that in mind, let’s get started. At first, I’d like to talk about how family caregiving has changed in recent years. How does the aging of the baby boomers, longer life spans and shrinking family sizes shape caregiving for our aging population? For that, we’ll turn to Edwin Walker with HHS’ Administration for Community Living. Edwin, it’s all yours.
Edwin Walker: Thank you, Mary Agnes. We really appreciate having the opportunity to participate in today’s webinar on such a critical topic. As it relates to the question that you posed, as we think about family caregiving, which is really the provision of care to an individual with some type of physical limitation or cognitive limitation that concept has been around forever. It’s really only within the past 20-30 years or so that we are really beginning to understand the impact of caregiving on individuals, on family systems, on the economy and on policy making.
When we look at the history, we think back to perhaps 1975 in the Older American Act, which is the primary piece of legislation that we implement through the Administration on Aging within the Administration for Community Living. Back then, it recognized the importance of supporting family caregivers through the inclusion of provisions supporting model projects focused on the development of concepts like adult day care, subsequently, continue to revise and update itself to include adult day health care and family respite services as examples.
We continue to watch what we’re developing within the states. There were a number of states that really took the leadership role in experimenting with family caregiving. Subsequently, as the Older Americans Act became reauthorized, in some way those state experiments helped really lay the groundwork for our premier program, the National Family Caregiver Support program, which was created 15 years ago in the year 2000.
Thanks to more recent research, the issue of family caregiving is really more visible now than ever before through the great work of entities like AARP and the Family Caregiver Alliance and the National Alliance for Caregiving. They’ve really given us a better understanding of who caregivers are and what they need. Equally important, this research that they’ve done has helped us better understand the economic value and impact of family caregiving and has provided us with the information we need to make a stronger case for the resources necessary to support family caregivers.
Research has also helped us better understand the totality of what family caregivers actually do. I would reference the recent AARP Home Alone study, and perhaps Susan or someone would mention that in more detail. For example, while family caregivers may have always performed complex medical tasks, we now know what those tasks are and what they entail. We also know how family caregivers feel about performing about those tasks, and what we as a society really need to do in order to better support them.
However, at the Administration for Community Living, our survey of caregivers that are served by our national family caregiver support program really indicates that a significant number are doing more than just the basic assistance with activities of daily living or instrumental activities of daily living. In fact, 91% of our family caregivers manage the finances of their care recipients, and 88% perform medical tasks such as medication management or wound care.
You mentioned the demographic shift. We’re seeing that clearly take place in our country, but it’s also impacting family caregiving. As an example, caregivers of adults today are older than their counterparts were over a decade ago. We also know that as the age of caregivers increase, so do the number of hours devoted to caregiving.
We’re also seeing shifts in gender roles, and that’s important to note. While women still carry the majority of caregiver burdens, increasingly we’re seeing men become more involved in all aspects of providing care. Further, as life expectancy increases it’s reasonable to expect that the time spent in caregiving and in the caregiving role will also increase. This has many implications for increased burden and the possibility that caregivers will need more formal services and supports for longer durations.
The work here at the Administration for Community Living that we’ve done through the national family caregivers support program, we’ve really seen that information and education needs of the family caregivers have shifted. Early in the program’s existence, we heard anecdotal evidence that seemed to indicate that caregivers needed basic program information like what help was available and where can I go to get it.
Most recently, we’ve seen or are starting to see that caregivers need more detailed information on the care recipient condition, on drug interactions, on things like legal information or access to public programs. We are really seeing family caregivers gravitate towards the greater use of assistive technologies of all types that can aid them in their work whether it’s like an app to track medications or doctors’ appointments, to using medical equipment and other assistive devices to provide care. Hopefully, that addresses your first question.
Mary Agnes Carey: I think that’s terrific, and you mentioned AARP, and I’m going to turn to Susan Reinhard to talk a little bit about her view on how family caregiving has changed in recent years.
Susan Reinhard: Thank you very much, Edwin. Great introduction, and thank you for mentioning the Home Alone study that we did, but we will get back to that later. I wanted to address this demographic shift a little bit more and your ratio that we call a caregiver support ratio. There it is. I call it the cliff, the caregiver cliff, because look at that. It’s quite stark. It’s very, very simple. This is a demographic ratio of people who are between the ages of 45 and 64, kind of that average age of a family caregiver in relation to those who are over 80, which is upwards of those who would need the care.
You can see, if you’re looking at this in 2010, five years ago, we were the best we’re going to be for the foreseeable future when we had seven potential caregivers for every person 80-plus who might need one. By 2030, it’s only 15 years from now, that’s going down to 4.4 potential family caregivers to everyone who might need it who’s 80-plus. That’s huge.
Then if we go to 2050, it’s 3:1. That’s why we call it a care gap or cliff. This information per the media, in particular, we have found to be incredibly important. This has gotten policymakers’ attention. It’s just a visual that people get. Some find it quite alarming, and it is alarming.
Edwin Walker: It’s quite stark.
Susan Reinhard: It’s quite stark. As simple as the data are, we have found this to be incredibly useful as a conversation starter. We also have another study that gets a lot of information. It’s called “Valuing the Invaluable.” That study we’ve been doing several times over the years. The most recent one was for this year. It looks at 11 different studies, so it’s what you call a meta-analysis, so looking at 11 different surveys and studies across the country we say in 2013 there’s about 40 million family caregivers who are providing care to an adult with limitations in daily activities. The estimates vary. That’s why we are trying to get an average here across these studies.
Then if you estimate the number of hours they’re doing on average and what it would cost if you were to hire a home care worker instead, that comes to $470 billion, billion dollars in 2013 numbers. That’s up from $450 billion just a few years before.
We have this data by state, by the way. If anyone’s interested, we can get you that. It’s also online. This is a national figure. Our state offices, in particular, like to use those state numbers again as a conversation starter. It’s quite stark when you see those billions and millions in dollars at the state level.
Mary Agnes Carey: It’s real money.
Susan Reinhard: It’s real money. I used it to say we have to make sure that family caregivers are more visible. They tend to be invisible. Let’s shine a light on them and let’s really value what they’re doing, their major contributions.
The next one we do to try wrap your head around that because it’s such a big number is trying to get some comparisons. This number if more than the total dollars, federal and state dollars, spent on Medicaid in the country. It’s actually four times more than the long-term care Medicaid dollars.
This is a new one we’ve used. It is about the same as the top four U.S. tech companies, so that’s Apple, IBM, Hewlett-Packard and Microsoft. I also like that Walmart one.
Edwin Walker: Yeah.
Susan Reinhard: Because it’s the world’s largest company, and we’re talking about the same value that their total sales are across the world. That’s how we try to get the conversation going.
Mary Agnes Carey: Sure. Kathleen Kelly, I’m going to come to you in just a minute, but since we do have a webinar here for reporters I want to go to our reporter, Anna Gorman, who’s covered caregiving for a while. Anna, talk a little bit about some of the changes you’ve seen in how you’ve covered it, how the media’s covering it.
Anna Gorman: You’re seeing more and more people trying to struggle to do this while they’re doing other things. I’m sure that everybody knows the sandwich generation who are taking care of kids, they’re taking care of their parents, and they’re working full-time, and it’s having an impact. I know we’ll get to this a little bit later. That’s a struggle for people.
The other thing that is difficult is that they are being asked to do things that maybe they don’t know how to do. I’m an educated person, but if I were to start taking care of an elderly parent or an elderly grandparent I wouldn’t necessarily know what to do, and these people don’t either. While state Medicaid agencies in some states are paying for families to take care of low-income elderly relatives, a lot of states don’t, so people are doing this on their own. Financially, it’s a big burden and it’s a big hit. Those are just a few of things that I’m seeing. I’ll jump in other questions later to add more to the conversation.
Mary Agnes Carey: Great. Next, we’re going to go to Kathy Kelly from the Family Caregiver Alliance. Our speakers are laying out the largeness of this problem, the importance of it. Do you think communities and policymakers are adequately responding to the needs of both the elderly and their caregivers?
Kathleen Kelly: First, I want to thank you for the opportunity to present today. I think this is a great panel and a wonderful topic, obviously. Communities and policymakers are responding, and I have to say as someone who’s been in the field for a while, I think in the past five years we’ve really seen sort of like a switch has been flipped. There’s a greater awareness of aging and caregiving. There’s lot of new consumer products on the market in the technology field. There’s advocacy campaigns that are going on both at the federal and the state and the local levels which I’ll talk about in a minute. There are new incentives within the ACA.
All of these things have conspired along with other trends too, but these are the four that I think about to really highlight the issues around family caregiving. If we can go to federal changes .
We’re going to start at the top in terms of federal changes. There’s been a number of really positive developments in Congress, one of the bipartisan caucus now about 33 members that truly is bipartisan with Republicans and Democrats that are coming together to really think about when legislation comes up or proposed legislation that they may have authored or co-authored across the aisle that they really give it a shot and to also educate other members of Congress about this issue.
The RAISE Family Caregiver Act recognizes this includes support and engagement which is really a strategy with specifics to guide communities and government, employers, providers and others to have some real specific actions that they can take place just passed in the Senate in the middle of last month. You can see there are other things here. I just wanted to highlight this too because they are tending to get the most visibility and the most action at this point.
There’s the care corps which is like the America corps for caregivers, Social Security credit, which I’ll talk about a little bit later, and paid family leave. There’re also a number of things that are happening that are not too prominently displayed which are in rule changes and initiatives that going out with funding that are asking to include families in the design of programs and new ways of doing business, for example, like care transitions at the hospital level and quality metrics.
There are a number of things that that are of going on [that are] a little bit hidden from what most Americans would want to, more information than they probably want to know about, but they’re all positive changes that are moving forward. It’s really good to at least recognize and highlight those because they’re really fundamental changes in the way we’re providing incentives and identification and inclusion and assessment and address the issues of families within larger systems. That’s an emerging trend.
Finally, we do have an IOM, an Institute of Medicine, report on family caregiving that will be published in 2016. That will be the benchmark for which other actions will go forward from, and it will be the first report of its type on the national level. Can we switch to the state changes?
The states really have had a lot of action. It’s typical that the states with the laboratories of new programs and initiatives, it’s very true of what’s happening across the states. The CARE Act, which I know Susan’s going to talk about in a minute, that has been introduced in the past in a record number of states, and I’ll let her address that. We’ve also seen states tackle Nurse Practice Act changes in terms of delegated tasks.
A shorthand way of understanding this is that many of the tasks that families do typically without training that have been mentioned before, home care aides, paid home care aides, are not able to do those tasks. The Nurse Practice Act really delegates some or all of those tasks to be done under supervision of the nurse. That enables families, for example, to work uninterrupted instead of having to leave and go home and give a medication to their family member. That’s a nurse delegated task. In many states, a home care aide that you hire is not able to do that. It’s a way in which we’re broadening the areas of responsibility but making it easier for families to maintain their routines, particularly, if they’re employed.
We’ve seen a lot in caregiver assessment and uniform assessments and particularly in public programs which for the first time identifies families as part of the care team and assess their needs. Paid family leave and sick leave has been passed at the state level. There are three states that have enacted paid family leave, but sick leave has also been one of the issues at the state level. Then there’s these caregiver, planning and advisory boards that are cropping up across the states. There’s a lot of action that’s going on at the state level. Next change.
At the Community level, we’ve seen a variety of different projects emerge, but all with some component of caregiver recognition and support. The villages movement, which is combining efforts within a certain neighborhood to enable individuals to get types of assistance that they may need. I’ve seen caregiver issues crop up in county and regional plans. Livable communities typically address caregiving and older adult issues within them.
We’ve also seen individual tax assessments cropping up in different communities, in counties specifically, or sometimes in cities to really assess on a special measure to fund services that would specifically support older adults and their caregivers. We’ve seen other types of funding strategies emerge as a result.
I also want to comment that we have seen legislation in various communities that actually address issues such as paid sick time in cities and counties that allow family members to take paid sick time to take either a relative to a doctor’s appointment or be there at the hospital, those types of functions, and be able to work that into their normal course of caregiving even though they are employed.
Mary Agnes Carey: Great. Thank you so much, and now we’ll go to Susan Reinhard with AARP to talk about the CARE Act.
Susan Reinhard: The CARE Act, which stands for caregiver, advise, record and enable, and that will show up on a later slide here, but this is a direct result of the research that was conducted, that I conducted, with my colleague, Carol Levine, at the United Hospital Fund and we called it Home Alone…..
The research showed, which we’ve already mentioned, that most caregivers now are performing these tasks. I am a nurse, and I often say we are asking family members to do things that would make a nursing student tremble. I remember giving an injection the first time, and my instructor had to calmly put her arm on my mine’s so I would stop shaking. We just expect family members to just do it. Here’s the prescription, go do this. Wound care, ventilator care, it’s amazing….
The model [CARE] legislation really just does these three things. The first one is to identify. Anybody of any age when they are admitted to a hospital is asked that they have a family member who has helped them in very broad language. If it’s yes, “Would you like that person’s name in the medical record?” That’s the first part. The purpose of that is so you can work with the family. If you’re going to patient and family -centered care, you have to know who you’re working with.
The second part is that is that they need to be notified before the discharge. They can’t get a phone call, “Pick up mom now or we put her in wheelchair and she’s at the door,”
which literally happens. Ideally, 24 hours has been the model legislation.
Then finally, if the family caregiver’s expect to perform these kinds of tasks they need to be offered instruction. Ideally, hands-on instruction with a return demonstration, but videos are coming into play. I call it anticipatory guidance because many people think they’re doing this. Nurses will say we do this already, and I believe in my heart they think they are, but they answer questions. The problem is the family caregiver doesn’t know what to ask. They don’t even think about it until they get home, so we have to anticipate ahead of time imagining what they should be asking. Next slide if you can move to.
This CARE Act is really viewed, I think, as a way to support nurses and other health and social service professionals do what their standards of practice requires them to do and which they really think they’re already doing, but make it clear that they do need to do this and simulate new thinking on how to do this. What is the best way to teach? There’re a lot of variation on culture and different family dynamics, so there’s a lot to do here, but we do think this is a very important aspect of reducing those hospital re-admissions. Many are seeing that, and many states are now saying we really have to do this for that particular reason.
Here’s a map, right there. That was just revised on Monday when the governor of New York signed the CARE Act there. We now have 18 states and Puerto Rico has currently enacted this law. There are, as Kathleen already mentioned, a number of states that are in progress. Pennsylvania just had some action this week. It is, I like that term, sweeping the nation. Funders are very interested in this, by the way, and not so much evaluating the helping with technical assistance and saying this is the only thing that’s going on at the state level. It’s very bipartisan. We’re very excited about it, and we’re going to keep moving into this next year.
Mary Agnes Carey: Again, just to clarify, this is a state initiative?
Susan Reinhard: This is state.
Mary Agnes Carey: Thank you.
Anna Gorman: Let me just jump in there. This is Anna. I just want to reiterate for the reporters that this is a really big deal. This is something that could fundamentally how people will be, how caregivers will be brought into the medical team and that’s something people are talking about both at the community level, the state level, and the federal level of whether caregivers are outside the circle or inside and this, the Care Act, brings them inside because as it stands now, often times people are discharged.
Elderly patients are discharged from the hospital with no instruction to any family member or any paid caregiver or anybody. In fact, a lot of the discharge instructions are given straight to the elderly patient and the minute they get home, they may forget what it was they were supposed to do or the person picking them up from the hospital may not be the actual caregiver, so there’s a big push both by AARP and the Care Act and in just communities around the country and in individual hospitals that are trying to prevent readmission to get caregivers in on the ground floor as they’re discharging and as the patient is being cared for in the hospital so the caregivers know what to do the minute they arrive home so they don’t turn around and end up back at the hospital next day.
Mary Agnes Carey: Great to know; let’s go to Edwin Walker on this about communities and policymakers. Are they adequately responding to the needs of the elderly and the caregivers?
Edwin Walker: We certainly think communities and policymakers are responding more than they have at the past. I think many of us would always argue that it’s never adequate but we are so pleased to see that there’s a greater acknowledgement and an intent to address issues. As we indicated that the states were the initial laboratories for innovation and just really thinking of how to address family caregiving issues and that’s both in the informal … what we used to refer to informal family caregiver support role, as well as the role of paid direct care workforce and so we know that from our efforts with the National Family Caregiver Support Program, that we see a number of huge challenges that family caregivers face.
The first being the issue of stress and not having enough time for themselves, the issue of the financial burden of caregiving and we also know that through our program, about a third of family caregivers are spending 40+ hours a week in terms of providing care which falls into the category of heavy caregiving. That has a huge physical toll on the caregiver as well as the emotional toll on the caregiver.
Mary Agnes Carey: It’s almost like another job.
Edwin Walker: It is more than another job. It reminds me of that old book related to caring for a person with Alzheimer’s that was called 36 Hour Day. Because caregiving really amounts to something that feels like a 36-hour day every day. We also are seeing that caregiving is varied and it really addresses the complex needs…. If you go to – thank you, you have the slide up — in terms of the participants that we have, 41 % of them indicate that they need information on the condition of their care recipient. 77% indicate they need, as I mentioned before, legal information. This has changed over time. It’s more a set of issues and needs of caregivers and we believe that will simply continue to increase. We also know, in terms of how people learned about our program, certainly you see from the bottom half of the slide that friends and social workers in community-based organizations as well as local offices on aging contribute a lot to educating individuals about accessing the National Family Caregivers Support Program.
But we’re so pleased that the media represents 6% of sources of good information and so we’re pleased to provide information to your audience today, and we would encourage your audience to always stick with it in terms of providing additional information to family members, friends, and neighbors who make up more than the bulk of caregiving in this country. It’s not through some publicly funded resource that caregiving takes place. It is through family members, friends, and neighbors.
For us in terms of where people can find help, you see we operate an elder care locator which is a service provided by the Administration for Community Living, Administration on Aging, which connects people to local services and information. It’s both a web based service through http://www.eldercare.gov as well as the toll free 1-800 number which individuals, caregivers can call, put in their ZIP code, indicate what they’re looking for and get resources and assistance in their local community. Also with regard to [respite 00:31:35] care, we operate the National] Respite Network and Resource Center. And the information is there as well for nationwide respite services.
Mary Agnes Carey: That’s terrifically helpful. We’ve got a couple questions we’re going to go to in just a minute but again I want to remind our audience to please send your questions in because this is for you and also don’t forget to tweet with our hashtag #KFF Health NewsCaregiving. The first question I want to ask is what would the caregiver ratio number look like in popular cities like South Florida and Arizona. I want to open that up to the panel. Do you see a change in the ratio number of caregivers in the snowbird states that tend to have a higher elderly population?
Susan Reinhard: Yes I would and conversely you see in states with younger populations, that they’re doing a little bit better but it’s not usually different because they are big numbers. But that’s why we do it have it by state and states are aging faster than other states, you will see differences.
Mary Agnes Carey: Anyone else want to jump in on that? Can you see a trend, a difference, in these snowbird states in the caregiver ratio?
Kathleen Kelly: This is Kathy, and I think when you look at the states that have the snowbird ratio, what you’re looking at is the fact that there’s not a lot of close family members that live nearby because they’ve got this retirement state and that we see a much more likelihood of long-distance caregiving happening. And there’s always that judgment call eventually about whether or not the decision should be made to put services in place in Florida or Arizona or those particular types of states or should they bring all the relative typically, a parent, back to the home community where there’s more informal support or more unpaid support that’s available to them. So we do a lot of counselling about those issues on our national calls.
Mary Agnes Carey: Are there any federal numbers that indicate anything along these lines about the caregiver ratio number changing and the Southern states? I’m not sure if the federal government gathers that kind of data.
Edwin Walker: No, we don’t. The best data we have is through our survey that we do and I think Kathy has indicated exactly what we would think. That many of the older individuals who moved to those snowbird state may need to move back to an area where they have family members to support them or provide care to them.
Mary Agnes Carey: Just a follow up question, Susan, about the Care Act.. The question is do caregivers receive any type of financial assistance through the Care Act.
Susan Reinhard: No. This is very simple, it’s all about the medical nursing.
Mary Agnes Carey: Next we’re going to go to a question. Mandi Woodruff from Yahoo Finance: How do today’s caregivers prepare for 2050 when there will be fewer people to care for them? What should they be doing now to prepare? Very interesting question about today’s caregivers. They’re taking care of an elderly relative. In 2050 they might need somebody to help them; what should they be doing now to prepare?
Susan Reinhard: At first I always say have good friends. Don’t count on your children. You don’t really know– it might work, it might not. But really I’m serious, try to avoid social isolation, meet people, help people. Build those bonds or reciprocity and all those things. And of course, take care of yourself. Take care of your health and get your home ready. That’s very important so you can live as independently as possible for as long as possible.
Mary Agnes Carey: You’re talking about bars to help you in the shower.
Susan Reinhard: Yeah, but also for example when I just got a townhouse not too long ago. A mile from the beach, I’m very excited about living in New Jersey, but I have been really working hard to make sure I can live on the first floor if I had to. As we redid the kitchen we opened the door a little wider so if I was in a wheelchair and my husband was in a wheelchair, you can go through. We probably are going to redo our bathroom, maybe we can knock out a closet and put a shower in. This is several years from now but think ahead. And it’s not just for you by the way, it’s for people who would be visiting you and people with disabilities, not just older people so it was a lot of planning…. People [also] underestimate how much money they’re going to need to care for themselves in the future. Most people don’t think about these things.
Mary Agnes Carey: How about the rest of the panel, would you like to chip in?
Edwin Walker: I would love to echo what Susan just said. She just identified the indicators of successful aging – it was first identified in a report by Rowe and Kahn — and it’s all about effectively planning and here at the Administration for Community Living, Administration on Aging, we focus on getting people to plan ahead. She mentioned housing issues, financial security, and taking care of yourself so that you remain as healthy as possible….
Kathleen Kelly: This is Kathy, and I agree with Edwin and Susan. I think when we’re talking with caregivers or particularly baby boomer caregivers, which is the largest share at the moment. We’re having two conversations. One is about the actual issues that are dealing with their parents and simultaneously people are thinking ‘what about me?’ In that way all those things that were mentioned is really important but it goes back to having livable communities as well, walkable, accessible public transportation, accessible to health care, facilities. Accessible housing. And a lot of people can’t give up the dream of living by the lake in an isolated community.
We tried to talk as realistically as possible about those issues and … and it’s hard for people to really think about that, but I think in experiencing caregiving themselves, the issues become a lot more real and we try to use those issues as a way to educate about their own planning.
Anna Gorman: From a journalist’s perspective, that’s a good story idea. Looking at how are people in isolated communities or even in rural communities where they are a little more isolated. They don’t have as many neighbors and friends to check on them on a daily basis. They’re not going to the grocery store every day or they’re not having visitors. What does that look like and what are some of the problems that exist now and are going to exist even more in the future.
Mary Agnes Carey: Next we’re going to go to a question from Halle Stockton from the news website Public Source. How do I go about getting state specific data on the prevalence of caregiving? Is it available on a regional or county wide level too?
Susan Reinhard: You can go to our website, AARP Public Policy Institute, and we have that “Valuing the Invaluable,” which I mentioned earlier with all of the state level data, so we’ll tell you how many caregivers you have in your state and then it’ll tell you an estimated dollar value for that number. We do not have it below a state level. It probably could be done; it’s not hard to do, but we don’t have that available.
Kathleen Kelly: This is Kathy, and actually we have used Susan’s data to break that out by county. It’s pretty easy to do, it’s just a computational issue so you can break it out and we find that really breaking it out by[ that] level for our state base, makes a difference for individuals that are looking at programs and initiatives and trying to get those kinds of estimates in place.
Mary Agnes Carey: Is there any sort of federal database on this type of thing?
Edwin Walker: You really have just heard from Susan and Kathy about the two best sources of that information.
Mary Agnes Carey: That’s great to know. We have another question that’s been in the press lately, maybe a part of the 2016 presidential campaign. Hillary Clinton as we know recently proposed a new tax credit for caregivers that would give families up to $6,000 in caregiving costs for their elderly family members. Here’s that question: With the election coming, are there ways that AARP or other groups can help influence or show support for these type of initiatives — and I know Susan is not on the lobbying part of AARP — but Kathy, can you talk a little bit about the Hillary Clinton proposal. What do you think it means for people? Do you think other candidates would follow her? Do you think it will be an issue in the campaign?
Kathleen Kelly: Is it possible to put up that particular slide up right now?
Mary Agnes Carey: Sure, absolutely.
Kathleen Kelly: There are four points to her announcement. A 20% tax credit, which is much higher than what we’ve seen in the past and probably is more in line with what the expenditures are on an out-of-pocket basis for families on a yearly basis. It also looks at how you improve the direct care worker quality of life. I would surmise, there’s not a whole lot of details. But this has to do with wage support, maybe benefits, working hours, all those things that have started to be addressed and other ways in the Department of Labor. Social Security credits for caregivers who have left the workforce, this is a huge financial issue that doesn’t get a lot of play that Social Security credits are not obviously accrued for somebody who has dropped out of the workforce and it means that it comes up at a later point. It may be saving money for various systems right now but down the line, it may mean a less secure retirement for … predominantly women who are just disproportionately affected by the financial issue.
Then funding for respite care. There’s not a lot of specifics on that, but the issue is to recognize that for those who have [been]… dealing with very complex, difficult, and cognitive functions in particular, they’re pretty much on duty 24/7 and there is no pathways for significant [breaks] except to bring in other family members to do that unless they are able to pay privately….. If you are on duty doing these very complicated tasks, you’re pretty worn out. You need a break so funding for respite care is one of those.
I might also add that in the election cycle initiatives, there is a family caregiver platform project… to get caregiving as a plank in all of the platforms. Republican, Democratic platforms across these states and that’s a very exciting opportunity to do education and to start to address these issues as a campaign issue. Hillary is pretty much the first one out the gate, but that doesn’t mean that we can’t raise these issues when the campaign really gets started…. So we’re really looking at that as a way to spread the opportunity, to raise the issue.
Mary Agnes Carey: The Clinton initiative — is it just for caregiving of seniors only, or does it also apply to other dependent family members?
Kathleen Kelly: I can’t answer that. I don’t have that much of a specific … I don’t know, Susan or Edwin if you’ve heard any more on the specifics of that?
Susan Reinhard: No I’m sorry, I don’t.
Mary Agnes Carey: If I can move to Anna for a second. When we talk about the election we hear mostly about the Affordable Care Act. But with this initiative from Hillary Clinton, do you think other candidates are going to jump in there and do the same thing or are we going to hear more about these ground-level health care policies in the platforms? How do you see this playing in the elections in 2016?
Anna Gorman: I do think that Hillary’s proposal got [the issue] on the table. It wasn’t been talked about in the last election cycle and this is the first time it’s really being brought up. But it’s not much money. What she’s proposing is about $1,200 dollars offsetting up to $6,000 in care each year. It’s not a significant amount of money, but she did mention these few different proposals including the Social Security credits, the respite care and the tax credit so whether other people will follow, we’re not sure yet. There are some other congressional proposals that we’ve been talking about a little bit that addresses caregiving as well so candidates may jump on those as well. I wouldn’t say it’s necessarily a politically popular idea, but it is something that facing those candidates and Congress members because their parents are also aging, so this is an issue that is going to continue to come up in society, and if the candidates are smart they will respond to it.
It’s a big population and the elderly population is a big population of voters. We’re all registered voters and likely to get out to vote.
Mary Agnes Carey: Just for housekeeping purposes, we’ve got 12 minutes left. Looking for more questions from our audience. Also don’t forget about our hashtag #KFF Health NewsCaregiving. Please get out there on Twitter, and we’ve talked about family caregivers a bit here, has the job of a family caregiver … has it really increased in its complexity with more families taking on medical tasks. Susan talked about that a little a moment ago. I’d like to go back to you Susan, I’d like you to talk about what sorts of issues does that present for the caregivers and the people they’re caring for when they are asked to do more?
Susan Reinhard: We have some data from caregiving in the US. It was released this summer, and I did this with the National Alliance for Caregiving, Gail Hunt’s organization, and AARP Public Policy Institute and this is the slide of the average caregiver which really masks the enormous diversity but we still are talking about women although I think Edwin pointed out, 40% are men.. They’re doing a lot of different things. I just want to point out the next slide. That we really focused for the first time on the higher-hour caregivers. These are people, this is 1 out of 3 of caregivers are doing at least 21 hours of care each week. If you take that one third, 32% of it, and look at the average within that group, it’s 62.2 hours. It’s unbelievable.
And most of them are working. They are very often the only caregiver. No-one else is helping them. They are more likely to be taking care of a spouse, they have a very high burden of care. They are twice as likely to be in the caregiving role for 10 or more years. 83% of these folks are doing these medical nursing tasks. 42% of those are doing that so they had no preparation for this work. They are more often to feel stress and physical and financial strain. And they are more likely to be in fair or poor health and to say that caregiving made their health worse and they often feel they have no choice. I just want to point that out that we are of course supportive of all caregivers but this is a highly vulnerable group of people so our entire report in caregiving in the US takes every data piece and divides it between those who are doing less than 21 hours and those who do more.
The other one I want to put out which was quite a surprise to us … you keep talking about boomers. One is for caregivers, it’s a millennial. We had no idea. By the way we only started with those 18 plus and we know there are children who are providing care. They are 27 years old, they’re doing the same thing, look at this. They’re sending 21.2 hours a week, they’re still doing these activities. They’re doing bathing and dressing and they’re doing instrumental activities of daily living and the medical nursing tasks and again they’re employed.
I just want to point that out and one more. Caregivers, [age]75 or older. This is the first time we’ve looked at this. 1 in 10 caregivers is over the age of 75. This is a highly, highly vulnerable group of people. They are very involved in communicating with health care professionals. 3/4 are doing that, 70% of them are managing finances. They are more likely to not have any help from anybody else. We really need to drill down into these various types of caregivers and see what their specific needs are and how we can target more assistance for millennials. Nobody even thinks of them doing this. That was a surprise when I saw that for sure.
Mary Agnes Carey: We have a question from Karen Mitchell, who is a freelancer for NPR: Are there any sort stats on the numbers of undocumented folks working as caregivers? There are literally networks of recent female immigrants from various countries who work mostly off the books in this capacity. So the question again is, are there any statistics on the number of undocumented people working as caregivers with the stress that there are many female immigrants that may be here working mostly off the books in this capacity. Does anyone have this sort of data? Susan is giving me a “no” here. How about the panel; I don’t know if there’s any sort of data source on this available?
Kathleen Kelly: This is Kathy, and I think when we’re talking about the employment of private aides paid privately, by family sources, we really don’t have our arms around that information at all.
Mary Agnes Carey: Now we’re going to turn to Anna Gorman who is a senior correspondent to KFF Health News, and since this is a webinar for reporters, Anna is going to wrap things up today to talk about story ideas and resources to help reporters cover family care-giving. Anna, you’ve got the floor.
Anna Gorman: Great, can you turn to the resources? OK, we’ve talked about a few of these. The speakers are from Family Caregiver Alliance and the AARP Public Policy Institute; those are great sites, and we will have these available for you all on the line later. There’s links available as well. The Peer Professional Health Care Institute talks more about paid caregiving, but they have great maps and information by state. The White House Conference on Aging, we didn’t get to but that just happened over the summer and one of the main policy areas was long-term services and support and with a fact sheet that came out of that with some new policies so that’s worth taking a look at. Pew research center and the Alzheimer’s Association also has a lot of research on this area.
Keep our eye out for the [Institute of Medicine] study which came out on family care-giving. I’ll be interested to see what that report has and what ideas it could produce. And then if you could go to the story ideas slide … I typed up two lists of ideas but even just in the last 45 minutes heard others. I want to mention this is a topic that some people think “there’s already been so much written about caregiving, we don’t need to write about this, there’s been so much written.” But it is constantly changing, so I really encourage all of you to jump in on these stories. First of all on the political issue that we were talking about with Hillary Clinton’s proposal and other proposals, there was a great story in The Washington Post in late October on that so I encourage you to look at that to get a good overview of what’s happening and maybe it’ll spark some ideas of things to write about in your state.
But going through the ones up here, we talked about the elderly caregivers. What does this look like for an over-75-year-old who’s taking care of a 95-year-old or an 85-year-old who’s taking care of a 100-year-old? What are the issues that come up with that and on the other side, what does it look like when you’re going to college and also taking care of mom? Are you going home and studying while you’re doing wound care? What are some of those issues? We talked about the medical tasks. Another story off of that is training. There’s a huge controversy nationwide over whether training should be mandated for caregivers. With some family caregivers saying, “I don’t need to be trained to take care of my daughter or my wife or my aunt who I’ve been taking care of for all these years.” But others are saying there’s really not requirements to even do basic first aid or to even have basic first aid training so if the state is going to pay caregivers maybe they should mandate some training, so that’s a possible story as well.
I just went to the Gerontological Society on Aging Conference last week in Florida, a week before last, and there were a whole bunch of panels on different populations. Whether it’s Latino, Vietnamese, just different ethnic groups, different regional groups on how caregiving differs by race and ethnicity. Are they more likely to put family members in assisted living or in nursing homes? How do the extended families … like a Latino extended family, change how caregiving is done. How states are addressing family caregiving. Edwin talked about the physical and emotional toll. Taking a deeper look at mental health issues or depression among caregivers. Are they getting the help they need? Are there model programs that you could profile where people are getting help for depression and going to support groups as caregivers?
And looking at the hospital making caregivers part of the team, I would suggest going into a hospital and seeing somewhere that is either … where this is working or where this is not working and what does it look like. If you could go to the next slide … We didn’t talk too much about this but technology. There’s a lot of new technology to support caregivers. Like GPS trackers on Alzheimer’s patients or medication reminders both for caregivers and elderly people in the home on when to take medication. That might be something worth looking at. I’d also be interested in a profile of this caregiver corps that one of the panelists mentioned. How are they making this a political issue? Are they creating activists among the elderly population?
And then a couple others that aren’t on here. Looking at model communities, I know there have been some stories about the village programs and the village communities, but are cities starting to make changes? Just like cities started to add bike paths and make cities more walkable, are they also taking into consideration elderly populations as they’re doing city planning and as they’re building new buildings and new highways and new streets? Is this becoming an issue, especially in areas where there are high numbers of elderly residents? The last thing is legal information. Somebody mentioned about people needed legal information. There’s a program called the [National Center for] Medical Legal Partnership out of community clinics to help patients, I wonder if there is something similar out there for caregivers and for the people they’re taking care of. As I mentioned, here, in just this 5 minutes, there’s this endless number of stories to write about caregiving and the changing nature and the changing demographics of caregiving so I hope you all will take a look at some of these and get started on them.
Mary Agnes Carey: You’ll be able to look at all of Anna’s ideas and all the presentations plus supplementary background information that our panelists have provided. We will have that at our site as soon as we can. Again, that’s KFF Health News.org. Keep this conversation going on Twitter at #KFF Health NewsCaregiving. And I’d like you to please join me in thanking our panelists: Edwin Walker of the Department of Health and Human Services’ Administration for Community Living. Anna Gorman, my colleague at KFF Health News. Kathy Kelly of the Family Caregiver Alliance. And Susan Reinhard of AARP’s Public Policy Institute. I’d like to thank our audience for participating today, and this concludes the KFF Health News webinar on covering caregiving.
