The Emotional and Financial Toll on Long-Term Caregivers

Christine Benz: Hi, I'm Christine Benz for Morningstar.com. Many Americans are providing long-term care for their loved ones, and that can take an emotional and financial toll. Joining me to discuss some research on this topic is Jennifer Benz. She is with the AP-NORC Center for Public Affairs Research.

Jennie, thank you so much for being here.

Jennifer Benz: Yeah, thank you for having me. I appreciate it.

Christine Benz: Let's discuss the research. But before we get into it, I'd like to talk about how you conducted the survey. How did you find people who are providing care for their loved ones?

Jennifer Benz: The study was conducted by the Associated Press-NORC Center for Public Affairs Research back in the summer of 2017. We did a national survey representative of Americans who are 40 and older who have some sort of long-term care experience, either as a caregiver or a recipient themselves. To do the survey we went out and used NORC's probability-based survey research panel, called AmeriSpeak, and we were able to go out to the 40-plus population and screen them for this caregiving experience to make sure that we had a representative sample.

Christine Benz: Let's talk about the characteristics of people who are providing care. They tend to be older and more female than the general population, right?

Jennifer Benz: Right. It is true that if you compare caregivers to the population of Americans 40 and over overall, they tend to be more female; they tend to be a little lower in income; and a little bit older. But I would say that those skews maybe aren't as dramatic as some people might expect. Especially, in terms of gender, we see caregivers are about 60% female, 40% male, whereas the population overall is 53%-47%. There is definitely a skew, but it's not too severe. Similarly, for age, they are just a couple of years older on average. And in terms of income, there are fewer caregivers in sort of the higher-level income bracket, $100,000 a year household income or more.

Christine Benz: Do you have a conjecture about why that is?

Jennifer Benz: No, I'm not sure that we know precisely why the lower income is more representative, other than the fact that we are asking people about personal caregiving and informal caregiving. It's possible that …

Christine Benz: Not paid caregiving.

Jennifer Benz: Right, that higher-income families are able to put more of the caregiving on to the paid side.

Christine Benz: Right. That makes sense. Let's talk about the population to whom these caregivers are providing care, if you can kind of talk about the characteristics of that population, and also what type of care is being provided in the context of long-term care.

Jennifer Benz: First on the who: For informal caregivers, the vast majority of this care is going to parents. About 60% of the respondents said that they are caring for a parent or a parent-in-law. About 20% are caring for a spouse; the other 20% is really a mix of extended relatives, close friends. Then for some of these caregivers, it's not just one person that they are caring for. So, we asked …

Christine Benz: Maybe both parents …

Jennifer Benz: Both parents, right. About a quarter or the respondents who provided care in the past year said that they were caring for more than one person at a time.

Christine Benz: In terms of type of care, the care is being provided just for sort of basic daily functioning--showering, cooking meals and so forth--but also a lot of medical care being provided by some of these informal caregivers. Let's talk about the type of care being provided.

Jennifer Benz: You are right. We've tried to sort of quantify what all was under this umbrella of long-term care services that were being provided by mainly family members. We asked about 16 different types of long-term care tasks or duties, everything ranging from basic cooking and keeping up house to bathing and helping someone get dressed all the way to the other side of the spectrum, caring for pretty clinical needs--glucose testing, caring for an IV, or a feeding tube.

From these 16 things that we asked about we sort of got two big findings that came out of that. One is that these informal caregivers are providing a lot of different types of care. Fifty percent of these caregivers are providing between six and 10 of those different types of activities, and another quarter are providing 11 or more. They are doing a lot. As you said, the other finding is that almost everybody is providing the basic upkeep of the house and helping out, daily activities. But we saw close to three quarters are providing some sort of assistance with medication, either administering or managing medications, doing health monitoring, like glucose and blood pressure screenings, and then almost half are doing some sort of clinical aspect of things, like, caring for IVs or feeding tubes.

Christine Benz: An interesting finding from your research was that many of these folks providing this type of care, especially the clinical care, had done so and were doing so without a lot of training. Let's talk about that.

Jennifer Benz: Despite all the care that's happening in these informal settings, most people aren't getting any formal training to go with it. Only 30% of the caregivers said that they had some sort of training--either directly being coached by a physician or going to a caregiving seminar, that kind of thing. Most of them are saying that they are teaching themselves or they are learning on the job …

Christine Benz: YouTube videos.

Jennifer Benz: Doing some reading on their own. That's the vast majority of it. It is true that the caregivers who are providing that sort of more clinical level of care have slightly higher rates of formal training, but it's still fewer than half.

Christine Benz: I want to look at the impact of people who are providing care while at the same time they are employed somewhere else. Let's talk about that balancing act that a lot of adult children strike where they are helping mom and dad or helping some other person who needs care while also holding down a job. What did you find there?

Jennifer Benz: We found that almost two thirds of the caregivers had been providing care and working at the same time. Many of them, about half of them, said that it's a difficult balance to strike. A lot of people are having to take time off from work in order to perform caregiving duties, and they do that through paid time off and vacation leave, any number of ways that they can cobble together.

I think one striking finding was that of those who do have to take some time off, a good proportion of them feel like it's--about a third--feel like it is a threat to their job security to have to make that choice. Then we saw infrequently, but there are some people who felt like they are suffered repercussions for being a working caregiver in terms of missed opportunities for advancement all the way through to feeling as though they were let go or fired because of the work-life balance with caregiving.

Christine Benz: That's an important dimension as well. Certainly, you can't discuss this topic without discussing the emotional toll that this caregiving takes. Before we get there I thought one interesting point was most people said they found it gratifying. Let's talk about that.

Jennifer Benz: We asked people a range of emotions or phrases, whether or not it described their caregiving experience. By far, the most commonly selected item was that it's worthwhile. The caregiving makes it feel worthwhile. Whatever sacrifices they are making, whether it's in the work-life balance or all of these myriads of duties that they have to perform, in the end they do consider it worthwhile.

Christine Benz: That's a big positive, but people did express that they had experienced a lot of stress related to providing long-term care, in some cases, depression and other issues. Let's talk about that dimension, which can be very, very real. It's isolating to be a caregiver.

Jennifer Benz: We definitely saw evidence in the survey of a bit of an emotional roller coaster. We've got almost everybody saying that it's worthwhile, but then almost three quarters say that it's also stressful and can be very time consuming. Then you also have about half who say that it makes them feel honorable and they enjoy it, it's a positive experience, but on the flip side can also say that it's difficult and some more of the negative emotions that they sometimes feel sad or depressed about it, too.

Christine Benz: People wrestling with a lot of different emotions. One interesting finding from your research was that the emotional toll probably not surprisingly tended to be higher among folks who are providing care to people with cognitive decline?

Jennifer Benz: We saw two interesting dimensions or characteristics of the caregiving situation where the negative emotions were a little bit higher. One of them certainly is when the recipient of their care has Alzheimer's or other cognitive impairments. The other one is that in the caregiving relationship when you are caring for a spouse, the levels of stress reported were higher in spousal caregiving than caregiving for a parent.

Christine Benz: Do you have a conjecture about why that might be?

Jennifer Benz: You know, it's unclear. I think one aspect of it maybe--we did ask people where caregiving was taking place. When caregiving is happening for a spouse, it's generally in the home. Whereas caregiving for a parent oftentimes about equally is taking place in the caregiver's home or in the recipient's home. Maybe that distance for some people is enough time to decompress. Whereas when it's your own spouse and your own home, it really is a nonstop …

Christine Benz: Twenty-four seven-type job. A lot of great information here. I know that this issue is top of mind for a lot of viewers. Do you have any broad takeaways from this research, ways that people who are confronted with providing long-term care, things that they could think about? Any thoughts on that front?

Jennifer Benz: As a nation this is an issue now. It is an issue that is going to continue to grow as the population is aging. While it's a nationwide issue, there is also an interesting dimension that a caregiver's experience can be very different depending on what state they are providing care in, because we don't have a nationwide long-term care system. All of these sorts of key topics we've talked about today--the training, paid time off, financial reimbursement for care--all of those aspects differ. Some states offer some of that compensation or programs and other states don't …

Christine Benz: To informal caregivers.

Jennifer Benz: Right. To informal caregivers. Our growing nation of caregivers is going to be a little bit of a patchwork depending on what state they are in. But there are a lot of resources out there for caregivers, and the foundation that funded this work, the SCAN Foundation out of California, has some really good tip sheets to work through--everything from foundations about how to even have that first conversation with your family, about what type of care you want and what situations you are looking for, all the way through navigating different programs and policies that are available.

Christine Benz: There's certainly a lot of caregivers' support networks in many communities as well. Jennie, fascinating research. Thank you so much for being here to discuss it with us.

Jennifer Benz: Thank you. I appreciate it.

Christine Benz: Thanks for watching. I'm Christine Benz for Morningstar.com.