How the Covid-19 Pandemic Will Change Caregiving

Anthony Cirillo is a healthcare and caregiving expert and president of the Aging Experience and the creator of the Caregiver Smile Summit. He creates solutions for the industry and connects companies and people to relevant services and products. A professional speaker and media influencer, Cirillo is a fellow of the American College of Health Care Executives with a master's from the University of Pennsylvania. This is the second part of our talk with Anthony. You can view the first half of the interview here.

Ben: You’ve been writing a lot about caregiving, and the last year has been a challenge for everybody and in a variety of ways, but it's been particularly challenging for older adults and those who care for them. How have you seen caregiving change due to the pandemic? 

Anthony: I don't think I'm the person who coined this, but I was one of the early ones using the term “Covid Caregivers.” I think we created a new set of caregivers and then put more burdens on existing caregivers. There's still so much we don't know about Covid and its after-effects. Whether it's going to be acute or chronic, nobody really knows yet. Some people recover from this completely and others don’t and are going to need some help. So this has resulted in millions of temporary or longer-term new caregivers. 

I think the other dynamic that happened is that Senior Living had a real shaking out and reawakening. And I think some of it was justified, quite frankly, because, the industry did need a wake-up call. But, people were contemplating taking mom or dad out of care at the beginning of the pandemic. And some did. Occupancy right now is down to like 80 percent of what is was last year, and this is one of the lowest occupancy rates ever. Big chains like Brookdale reported only 70 percent occupancy. Not their fault, just the unique situation we’re in. 

Thirty-five percent of people who are considering care communities are now reconsidering it. So they're not even making that next step, which gets to the fact that caregiving is changing. That's sort of a knee-jerk reaction. Are you really prepared to pull your parents out? There are financial considerations, too. Chances are you'll probably save a lot of money by moving them out. But if mom or dad are living at home, how might that impact your finances?  So you really need to understand the implications, run the numbers, and understand what mom or dad can contribute, or if the financial burden fully falls on you.

Ben: What factors should people consider who are thinking about aging in place instead of moving to a care community?

Anthony: There are a lot of important issues to sort out. Is your house equipped for aging in place? Do you have universal design that can accommodate any age or disability? These are questions that you probably don't immediately think of. And what type of care does mom or dad need? Especially if you're pulling them from a skilled nursing facility or memory care, you're going to need that kind of care at home. And that's one of the things about caregiving: there's an undue burden on family caregivers to take up the role of nurses. And imagine doing that in the middle of a pandemic, when many have lost their jobs, or are now working from home while also running a daycare or school out of their home for their kids. 

And then there's the mental and emotional impact, and unresolved family issues that play a role in this decision. If you want mom or dad to come live with you, from a practical standpoint, you need it to physically work with your current living situation. I didn't have a downstairs bedroom when my mom needed more care, so we had to move mom to an independent-living community. So even if this pandemic had hit while I was caregiving (mom passed away in 2016), and we were thinking about pulling her out, I don't know if we could have done it. I don’t think we could have provided enough quality care while balancing everything else going on in our lives.

So it really just puts a big burden on families. Healthcare of the caregiver has always been a huge issue. How many of us have seen our own doctor in the last year? How many of us have not taken the needed self-care or found personal space?

Ben: During this past year, it seems that because of the challenges around care communities for older adults, that caregivers themselves have become a little more front-and-center in our culture. Have you noticed that society is placing more value on caregiving and caregivers than pre-pandemic ? And, do you think that sort of shift of better appreciating and celebrating caregivers will be here to stay?

Anthony: When I talk to my peers, we're all preaching to the same choir. We believe that. But in reality, yes, there's been a lot of talk, but not a lot of movement. When a company does something, and think they've done great things around caregiving, it's because they've finally embraced flex time or paid leave or something like that. And a lot of it, and rightly so, is couched around mothers and children in daycare. 

The Biden administration clearly has a plan and an inclination to want to help caregivers. But even a lot of that language is couched around childcare versus adult care. If we can be swept up in the coattails of that, that's great. Certainly the mental and emotional aspects of caregiving have become front-and-center. Is it going to change policy? I don't know. Is it going to change the behavior of companies? I'm on the fence because companies were so focused around specific policies like leave. But company culture has to change before we can go down that path of fully embracing caregiving and looking at policy solutions. We already know caregiving could be a career-ending event, whether you're a man or woman, but particularly a woman. And there are data that show how many hundreds of thousands of dollars caregivers lose in their career because of these extra responsibilities that take away from their jobs. So it's a cultural thing.

And a lot of times people want to remain in their jobs and be productive instead of being full-time caregivers. Giving them time off to go home and provide care is important, but often because they don't have the tools to do what they need to do. This really points to why having a Joe & Bella is so important. It’s a service with curated product lines so caregivers can make easy and simple shopping decisions, allowing them to get back to both being productive at work and providing care.

We need to rethink caregiver benefits as well. A lot of them are focused around employee-assistance programs. And a lot of those are Band-Aid solutions. So I think, yes, there's more talk. There might be more action from a federal level, but we have to change company cultures and it's a hard time to do that. You're asking people to put more into meaningful benefits for caregivers at a time when a lot of industries are struggling and suffering. So I think there's hope, but you've got to keep that momentum going so that it turns into action. And I think the jury's out for that in terms of what's going to actually happen.

Ben: A recent study from AARP revealed that 25 percent of Millennials, all of whom are in their twenties and thirties, are now caregivers. How do you see this changing the caregiver dynamic, and do you see these younger cohorts approaching caregiving differently than older generations?

Anthony: With this generation, there's a work-life balance priority more so than for older groups. There's still important universal issues regardless of generation, like paid leave and childcare. But it's not just paid time off, sick days, paid family leave, or flexible work schedules. That is all-important. But it's the culture. It's the mission. Are people really taking these issues seriously? Are they addressing them holistically? I work with a company called Logistics Health. And they actually give each of their employees three hours a week off of their normal schedule to just take care of themselves. They have a whole primary-care facility within the company so that their employees can receive care while at work. They have geriatric-care managers that can help employees. So, when you can really think about the bigger issue, it's not just the caregiver taking care of someone, it's the caregiver taking care of themselves. And how are you going to do that? I obviously think that technology is going to play a bigger role for caregiving Millennials. That's why a lot of my partners are technology-based.

For example, I'm wearing a Fitbit, which is connected to an app called Buddy. And Buddy has a couple of capabilities. One of them is fall detection. So you don't have to wear a pendant and press a button. Buddy can also alert caregivers if a dementia patient is wandering or walks out a community’s front door.

There is also a demographic shift going on. There are more male caregivers stepping up. I think they're more mission-oriented than before. They're more service-oriented. And that's a great thing because a lot of people accuse us Boomers of being the selfish generation. It's good to see people learning from our mistakes.

Ben: How do you see care communities evolve as more and more Boomers become residents? 

Anthony: I'm just being radical here, but do long-term care facilities of any kind – independent-living, CCRC, assisted-living, nursing homes -- are they all going to have a place in the future?

The average age of people in assisted living was 85 when I first started out in this space. And that's now creeping up to 90. So people are waiting a lot longer. And they’re living longer.

My wife and I have had these conversations. We've retrofitted our bathroom for that reason. We've talked about how we don't have a first floor bedroom. We talked about an elevator or a stair lift. That’s a big cost for just one of many necessary improvements that will help keep me in my home longer.

But even bigger than that, I question the idea that older adults should be sequestered and isolated in communities away from everyone else. Did we ever really mean to put all older people in one place together and not part of a community where they're interacting with all ages and generations and diversity? A lot of these communities are very good, but I think we have to rethink some of their design choices. And for those who age-in-place, are they isolated in homes by themselves or do they have communities that rise up around their elders and support them?

The overall cost of aging is going to be a determinative factor in how people end up aging. Some people can afford going to these nice communities or retrofitting their home, and there are people who are never going to be able to afford moving to a community with hundreds of thousands of dollars of deposits and monthly fees. But if you are lucky to live in one, they're going to do whatever the residents want regarding technology. Certainly, Boomers have already proved ourselves more demanding than the older generation. So we’re going to want the technology and the bells and whistles. Boomers are going to want a curated experience that fits their lifestyle. They won’t want the same experience their parents had.