The Age Guide: Perspectives on the Aging Journey

Caregiving with Compassion: Balancing Care and Work

• Age Guide • Season 1 • Episode 11

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In this series of our podcast, we want to shine a light on the commitment and dedication of more than 44 million family caregivers in the United States who provide personal assistance to loved ones with disabilities and other care needs. These caregivers, also known as informal or unpaid caregivers, make up 21% of the adult population today. Most also work full-time jobs in addition to their caring duties and 6 out of 10 report that caregiving has affected their ability to do their jobs. In fact, 15% have taken a leave of absence, and 14% have had to reduce work hours or change jobs as a result of their caregiving responsibilities. 

On Thursday December 1st, AgeGuide is hosting a virtual caregiver seminar called, “The Caring Economy: Supporting Your Employees Who Care for Family”. The keynote speaker, Ellen Birchander, Director of the Gerontology Department at University of Massachusetts, will talking about the importance of supporting employees who provide essential care for a loved one. We invited Ellen to join us for a one-on-one conversation ahead of the seminar, to get her thoughts on why caregiving is so challenging in America today and how it affects all of us. 

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SPEAKER_00:

Hello and welcome to The Age Guide, perspectives on the aging journey. We are here to be your personal age guide and enhance your quality of life on the road ahead. In this series of our podcast, we want to shine a light on the commitment and dedication of more than 44 million family caregivers in the United States who provide personal assistance to loved ones with disabilities and other care needs. These caregivers, also known as informal or unpaid caregivers, make up 21% of the adult population today. These caregivers are also known as informal or unpaid caregivers. They make up 21% of the adult population today. Most also work full-time jobs in addition to their caring duties, and six out of 10 report that caregiving has affected their ability to do their jobs. In fact, 15% have taken a leave of absence, and 14% had to reduce work hours or change jobs as a result of their caregiving responsibilities. On Thursday, December 1st, Age Guide is hosting a virtual caregiver seminar called The Caring Economy. supporting your employees who care for family. The keynote speaker, Ellen Birchander, Director of the Gerontology Department at University of Massachusetts, will be talking about the importance of supporting employees who provide essential care for a loved one. We invited Ellen to join us for a one-on-one conversation ahead of the seminar to get her thoughts on why caregiving is so challenging in America today and how it affects all of us. Let's listen in.

SPEAKER_02:

So Ellen, thanks for joining us today. We know you're on the East Coast. Where are you from exactly? I

SPEAKER_01:

live in New Hampshire. I work at UMass Boston in the gerontology department in the McCormick School of Policy and Global Studies.

SPEAKER_02:

Okay. Well, wonderful that you could be here with us. This virtual world makes so many more things possible for us. We're glad to have you on our podcast. And I know that you're going to be joining us for the caregiver seminar that we're going to be doing. And you're going to talk about the business case for providing benefits to caregivers to support them in their role. So today we get to sit down and have a conversation with that topic more generally and kind of set the stage for that seminar. And I understand that this time is really near and dear to your heart. So Ellen, can you tell me a little bit about what you do and how this caregiving topic became your passion? Sure. I

SPEAKER_01:

run a master's program in management of aging services, but I also was a caregiver for many, many years, having the responsibility of caring for my aging parents and my small children and working full-time was very stressful. And so I found that I wasn't alone, but when you're going through it, you feel like you are. And it doesn't matter if you study something your entire life. When you go through it yourself, it really shapes your perspective. It really brings it home. So I learned more and more about what was not available and what was. It really made a difference in how I viewed my work. It really plays a part into how we develop our programs, how we teach our students, and how we shape the field of aging. When we talk about the field of aging, it is a field, not a discipline. If you go to nursing school and become a nurse, you get a toolbox and you learn specific skills, and you can focus in particular areas like pediatrics or ER or whatever. But very specific direction. When we talk about aging, it's everything that encompasses life from economics and healthcare, nutrition, entertainment, travel, consumerism, and it just impacts every aspect of a person's life.

SPEAKER_02:

Yeah, it's not just health. I think sometimes people just think of aging as being a sort of a health issue.

SPEAKER_01:

It is not. No,

SPEAKER_02:

you're

SPEAKER_01:

absolutely right.

SPEAKER_02:

It's interesting that you had your own personal experience with care Did you recognize that right away? Because I feel like a lot of people don't necessarily identify as a caregiver initially, especially. They just see themselves as, you know, a parent or a spouse or a daughter or son. And it takes a little while to realize that you've kind of transitioned into more of a caregiver role sometimes. Did you find that to be true?

SPEAKER_01:

I think I had a different experience because my parents also took care of my grandparents. I think I recognized it fairly early on that my responsibilities were becoming greater as my parents grew older and had greater levels of disability. I have twin daughters, so I had young children because I had my children later and my parents had me later. I had older parents and younger children, which was a really unique and interesting position to be in. What's really funny is you just do what you have to do. You go through, you put one foot in front of the other. You work, you get a vegetable on a plate, you go to dance class, you, you know, take to the doctor's appointments, you just do whatever is necessary, but it takes a toll. What you don't realize even when you live through it is the toll that it's taking. until something happens.

SPEAKER_02:

That is definitely true. And maybe that's kind of part of the, you maybe see that you're caregiving, but you don't necessarily see the stress and the toll that it's putting on you. Like you said, you just do the next right thing. You take the kids to school, you pick up the medication, you stop in and check that medication's being taken correctly. And all of a sudden you're getting overwhelmed and you maybe don't realize it.

UNKNOWN:

Exactly.

SPEAKER_01:

Pretty. impressive in a little bit of a frightening way, given that the caregiving needs will change.

SPEAKER_02:

Right. Let's stop for a minute. What does that actually mean for us, that there's going to be so many fewer young people than older adults?

SPEAKER_01:

Well, when you think about the social responsibilities, that's going to need to change because there'll be fewer people to care for older adults as they live longer with greater disability. In addition, when you think about the economic issues that the United States will face with more people over the age of 65 and fewer people in the workforce. Although older adults are working longer.

SPEAKER_02:

They are. They're healthier. They're wanting to stay engaged and stay in the workforce longer. So we'll see.

SPEAKER_01:

It'll be interesting to see what happens. It will be. In the United States, there are, according to the 2020 census, 53 million people that are family caregivers. And that's an amazing number of people. There have been changes from 2015 to 2020 because in 2015, there were only 43 million and now there are 53. That's a big jump. Yep. Caregivers have a variety of different responsibilities. So for 22% in 2015, we're caring for people with Alzheimer's disease. Now it's 26%. 18% reported having difficulty arranging for care. Now that's 26%. And in 2015, 17% reported poor health of their own. And now that's 21%. And that's a little bit frightening. All those statistics are increasing. And 39% of the caregivers in the United States are men and 61% are women. 61% of the caregivers are working.

SPEAKER_02:

That brings a lot of challenges along with it, trying to balance work and caregiving.

SPEAKER_01:

It certainly does. In Illinois, an AARP report in 2021 said that 47% of people 50 years of age and older have had caregiving experiences. And 64% of those people were working while they were caregivers. That's a lot of caregivers who are in the workforce. It's a significant part of the population that we don't recognize. We don't address. We don't pay attention to. According to the CDC, one in five people are caregivers. Half of them are caregivers for two or more years. 40% are caring for parents. Others are caring for people who, like a child who has a disability or other family members. One third of them provide more than 20 hours a week of care.

SPEAKER_02:

That's like a part-time job in addition to the fact that 60 some percent of them have a job outside the house as

SPEAKER_01:

well. It is, it is. And the types of care they provide, 80% provide assistance with household tasks and laundry shopping, meal preparation, errands, etc. But 50% are actually doing personal care.

SPEAKER_02:

And what does that entail?

SPEAKER_01:

Bathing, dressing, ambulation inside, toileting, really hands-on assistance with daily living. That's very, very stressful.

SPEAKER_02:

And these family caregivers in doing all of this are keeping people out of long-term care. They're providing this care so that people can stay at home and in the community as long as possible. And generally, people don't want to age in long-term care. We know they would like to stay at home in the community. And so caregivers are doing a really important service to our society. If we all want to stay home, how do we do that? And paying for care is were expensive as well. So family caregivers are taking the brunt of that.

SPEAKER_01:

It's estimated that 80% of the care for older adults in the United States is provided by family caregivers.

SPEAKER_02:

Wow,

SPEAKER_01:

80%. There are 23 million family caregivers working in the United States right now. That's an enormous number. No one wants to go into a nursing home long-term. A skilled nursing facility is not where people want to be. They lose their autonomy, their independence, their ability to contribute to their worlds, even if their worlds of their family or their own personal environment are in a facility, you'd lose that opportunity. And that's when people give up. If you can't contribute, there's no reason to live.

SPEAKER_02:

Right. And we've done some interviews for this podcast with folks who've been living in long-term care and they express frustration with just like they can't even set their own schedule of when they get out of bed in the morning, when they go to bed at night, when they get to use the toilet, things like that. And that can be frustrating. I mean, sometimes long-term care is necessary to keep people safe and it's the best option for some people. So I'm glad that it's available. I think that some systems change in the area of long-term care would be very helpful so that we didn't have to fear so much. So it didn't be such a horrible experience. But as you said, most people don't want that as an option. So they want to be able to stay at home and these family caregivers are really filling in the gap so that people can do that.

SPEAKER_01:

Absolutely. And it really makes a huge difference in quality of life. Caregivers face a variety of issues though. Depression and anxiety among family caregivers is very high. They report experiencing fatigue, some cognitive impairment, more like brain fog, family stressors when you have competing priorities and responsibilities, the financial toll significant. Family caregivers report spending over$7,000 out of their own personal finances in some areas. If you include time away from work and other expenses, the cost can be up to 26% of their income, which is outrageous. They have sleep problems, reported decreased physical health. They experience relationship stress. They feel like there's very little support. And oftentimes, there's no time for self-care. If you have children, you know that your life is not your own anyway, but you have the hope that they will grow up and move. It's

SPEAKER_02:

an investment into the future where you will have your life back. Yes.

SPEAKER_01:

And they go to school and they do other things. And you have, as time goes on, your relationships change and grow. And there's a positive, it's a positive impact. When you're caring for someone you love, who is an older adult, who lives with greater disability and whose health really is not going to get better, the stress of dealing with role reversal, dealing with loss, not only loss of the person you're caring for, but loss of their ability to communicate, loss of the relationship you once shared. It just manifests itself in really challenging ways for family caregivers.

SPEAKER_02:

Yeah, I can see that. I like the way you outlined that difference in the types of giving because you're right, when you're caring for a loved one who's aging, you're going to constantly be experiencing new levels of loss as they progress in their disability, So you're having to adjust to that all the time. So you're just experiencing multiple losses all of the time, which is always sad and emotionally heart-wrenching, especially when you're so invested in this person and you love them and you're caring for them every day. Seeing that at the end in

SPEAKER_01:

your future is hard. No matter how prepared you are to lose someone you love, you're never ready. And then you throw in the complication of having... to work, to buy groceries, to pay your ever-increasing electric and oil bills. It's amazing that you still have to provide for your family, provide for yourself. And so that complication is really difficult. If you went to any CEO in the country and asked them, what percentage of your workforce has family caregiving responsibilities? They'd probably say, well, I think about half our workforce has kids or X number. We know that X number of people have kids because they all have family health insurance, but they don't think about other types of family caregiving responsibilities.

SPEAKER_02:

It's just not on their radar.

SPEAKER_01:

No. When you think about caring for children, that's tough enough. Snow days are difficult. Sick days are difficult for children. And employers, I'm sure, have some concern and frustration about that. But imagine having other types of family responsibilities thrown in there. And the Family Medical Leave Act in the United States, that protects people's jobs when they have family care responsibilities. So they might have a job to go back to, but it's still not going to pay their mortgage.

SPEAKER_02:

Right. And it doesn't cover people who are working in smaller organizations. The organization has to be a certain size. So not all workers are even covered by family medically backed.

SPEAKER_01:

You're absolutely right. So when you think about the types of issues that caregivers face in the workplace, when they have extra responsibilities, their attendance may change, their level of fatigue depression, anxiety, physical well-being has changed. So they're not probably as productive as they might be. Just the amount of concerns that they have, like, will I find someone to cover for mom tomorrow so I can get to work? All those additional pressures have to come out somewhere. It's like squeezing a balloon. Employers may not be aware of their employees' other responsibilities and the fact that they may not be functioning in capacity in the workplace because of those responsibilities. That's really challenging for not only employees, but employers.

SPEAKER_02:

Yeah, it sounds like it. So are you on a mission to educate employers about this? It is

SPEAKER_01:

all of our missions, I think. We are very, very lucky that there are lots of organizations who really have made this a priority and that we have the privilege of supporting and working with these organizations who really believe that things need to change, not only for the benefit of caregivers and older adults who require care because the world is shifting so dramatically. Employers need to have their employees functioning at peak efficiency. So it's to the benefit of everyone to recognize this is a series There are several organizations that have gotten together to develop opportunities and strategies for addressing this issue. So there's something called the RAISE Council. It's the it's it's recognize, assist, help. Include, Support, and Engage. And their goal is to develop a national family caregiver strategy. And it's really pretty interesting because it's basically formed by a consortium of different organizations to really develop goals, the issues that caregivers face. So there are basic goals are one to increase awareness and outreach. That's really the goal number one. It's really important because if we don't know about it, if employees don't know about it, if people aren't aware, then we're not going to do anything about it. The second goal was to advance partnerships and awareness because that's really, really an important part of developing change. We also need to strengthen services and supports because there just isn't enough out there to support caregivers. But number four is an interesting one. It's to ensure financial and workforce security for employees. And that's really important. What can we do to keep people working and keep people supported and engaged in the workforce. Exactly. And so they have several components for that. And one is develop an opportunity for family caregivers to provide care without negative impact to their near and long-term financial health. One of the problems is family caregivers lose their financial stability and security because they leave their jobs because they can't do both, or they go to part-time and so they're not building towards Social security. Things have changed a bit since the pandemic because a lot of people learn to work at home. So maybe the more flexible work at home hours or options may offer opportunities for caregivers to remain engaged and be more productive. Also, family caregiver access to financial planning and education information and tools. Because when you're a caregiver, you're not thinking about your own personal finance other than paying your mortgage or buying your groceries.

SPEAKER_02:

Right. You're just trying to get by. Exactly.

SPEAKER_01:

services and supports to reduce the out-of-pocket costs because it is very, very expensive and it's only getting more so. And the last goal that they had was to expand data research and evidence-based practices to improve caregiver supports and situations.

SPEAKER_02:

So are you a part of this? Is it a coalition? Is that the right word to use? Or is it an organization? It

SPEAKER_01:

is a public-private collaborative, and it includes, the participants are the Administration on Community Living, which is our federal government, the Leading Age Long-Term Services and Support Center at UMass Boston, which is what we're a part of. Okay. Community Catalyst, which is another advocacy organization. The National Academy of State Health Policy, which is another important piece of this. the National Caregiver Alliance, and the Hartford Foundation, which is wonderful. So a group of organizations have come together to really work toward providing caregiver supports, information, and practice.

SPEAKER_02:

And try to really address some of these issues in a strategic way. So they've got a plan and they're working on each of those. My

SPEAKER_01:

work is mostly applied. I work in communities with a variety of other community-based organizations to Try to share information. And then what we do is we take this information back and we build it into our curriculum. And the program that I run at UMass Boston is the Management of Aging Services Master's Program. Our students leave our program and run a variety of long-term services and supports organizations. They develop businesses. They work for developers. They work in government. They do public policy. So what we try to do is share this information so that just changes the face of the field.

SPEAKER_02:

Oh, that's excellent. That's a really neat way to tackle it, is building up advocates, building up people who want to work in this field and understand the issues of caregiving and are willing to roll up their sleeves and try to address some of these issues. So you're doing really important work, Ellen. Oh,

SPEAKER_01:

I hope so. I tell my students that someday if I ever retire, they need to save their pennies because I'll need to money because I want to be an activist.

SPEAKER_02:

That's your next career move. That's my next career move. So yeah, you're going to be spending some time behind bars. Perhaps. I hope not. I hope not. It's always good to have a backup plan though. Exactly. Your students bail you out like that.

SPEAKER_01:

It's nice to have a warped sense of humor.

SPEAKER_02:

You kind of have to when you're dealing with such intractable issues, right? Sometimes. Yeah. I appreciate you sharing just how challenging caregiving is and I'm wondering do you have a sense of like what's going on around the world on this issue why is it so challenging in the United States and is it challenging like that everywhere or are there some countries who have figured this out and have gotten it right at this point what is it about the United States and the system that is just not working for caregivers

SPEAKER_01:

it is challenging all over the world there are some Some countries that do it differently. Asia is having a great deal of difficulty. China with their one child left behind policy, which they've changed, caused major issues for older adults in China. And they're a collectivist society. Children have legal responsibility for their parents, but their economy changed too. So two people have to work and there aren't a lot of children to take on the responsibility of care. And so China's scrambling to develop national supports for older adults that they didn't have the infrastructure We started developing an infrastructure in the 50s and 60s. This is brand new for them. In the last 15 years, they have all of a sudden an explosion of older adults and no infrastructure to provide

SPEAKER_02:

any support. And no infrastructure because it's always just worked for them. Children take care of the

SPEAKER_01:

parents. Absolutely. And Europe is experiencing the same population aging that the United States is. And they're are some countries that have a lot of Scandinavian and Northern European countries have very wonderful long-term services and supports for older adults, but they're very different in their structure. They're homogenous countries. They have socialized medicine. They have a very different... And they're small. They're smaller countries than we are. They're not as diverse. So they have a different... governmental and financial structure to care for older adults. And so it's still challenging because people are living longer with greater levels of disability, but they have a different approach. We are a very capitalist society. We focus on youth. We are a youth-driven society. And so we shy away from aging. We shy away from addressing differences among people.

SPEAKER_02:

Yeah, we definitely have our biases and that affects our policies. Absolutely. And ageism affects all of us and impacts how much we're willing to talk about these issues and challenges. It's

SPEAKER_01:

so true. And it's expensive. And when you look at our healthcare system, in the United States compared to more of a, we're the only industrialized country that does not have universal healthcare. And healthcare is incredibly expensive and older adults have Medicare which covers 80% of the costs of their services, but they have to have a supplement to cover the other 20%. Medications are ridiculously expensive and there is Medicare Part D that they can purchase, but you have to really understand how Part D works. And even if you purchase Part D, that does not mean it's going to cover all of your medications or that it can't change during your coverage period. And so it's ridiculously expensive for older adults to have good healthcare. And oftentimes they have to make choices between food and medication and whether or not they're going to go to the doctor. And so that also impacts caregivers. You do not want to see your mom not have breakfast because she chose to pick up her medications or not want to address a medical issue because she doesn't have the copay.

SPEAKER_02:

Right. So that's where that out-of-pocket for caregivers comes in. They're helping to augment our social system in the United States.

SPEAKER_01:

Yep. Caregivers help with personal care, specific bills for parents, but also If they need services, I mean, it's very, very expensive to hire people to come in to the home and

SPEAKER_02:

help. And home care is very expensive. Yes. And there's not enough workers even for paid caregivers.

SPEAKER_01:

It's very, yeah. The shortage is just unbelievable. Right. You can go to McDonald's and make more money and have benefits, better benefits.

SPEAKER_02:

That's really unfortunate. Yeah.

UNKNOWN:

Yeah.

SPEAKER_02:

Yep, that's where we are right now, I guess. So I'm glad that this group exists, this collaborative group that you talked about working on these issues because they're really tricky issues. They're very entrenched. They're very systemic macro level. But if we all engage with this issue and we're all working together on this, it sounds like there are some actual practical things that we could start doing right away.

SPEAKER_01:

Absolutely. Absolutely. Absolutely.

SPEAKER_02:

That's excellent. So that's encouraging. And I'm excited to hear you share at our upcoming seminar, a little bit more about caregivers in the workforce. So I'm glad we got a taste of that today. And that you were able

SPEAKER_01:

to share me.

SPEAKER_02:

Well, that was, this was excellent. It really ties in so nicely with a lot of our other podcasts that we've done because, you know, we provide those older Americans act services that address a lot of the needs that you said, and we advocate for older adults to get more of these services and to have things in place so they can stay at home and in the community. And we're always working to support caregivers. So, um, you know, we do caregiver assessments called T care assessments where we can evaluate the caregiver's needs and try to address those with a number of different wraparound services to help them care for their loved ones as long as possible. So, you know, this is also near and dear to our heart. So I think we have a good future collaboration with you and we'd love to stay in touch with you. Thank you very much.

SPEAKER_01:

That would be wonderful.

SPEAKER_02:

Great. Thank you, Ellen. Thanks for joining us. Thanks for having me.

SPEAKER_00:

Thank you for listening to The Age Guide, Perspectives on the Aging Journey. We hope you learned something new on this podcast because we all have a stake in promoting a high quality of life for people on their aging journey. Age Guide coordinates and administers many services for older adults in Northeastern Illinois. We serve DuPage, Grundy, Kane, Kankakee, Kendall, Lake, McHenry, and Will Counties. Our specially trained professionals are available to answer questions and connect you with local service providers and resources such as the Family Caregiver Support Program, which provides valuable resources for those who are giving unpaid care to adults 60 plus or to someone with Alzheimer's disease or a related disorder. The program includes caregiver resource centers, respite services, gap filling services, legal services, caregiver counseling centers, training and education resources, and support groups. If you are interested in these services or want to learn more, go to our website at hguide.org. Call our offices at 630-293-5990. Please follow our podcasts so when we post our monthly podcast, you are notified on your streaming account. Thank you, and we will see you next time. On the Age Guide, perspectives on the aging journey.