How Covid Changed and is Changing Caregiving
Sherri Snelling is a leading corporate gerontologist and national influencer on caregiving and Alzheimer’s. Sherri has written books and articles, spoken at national conferences, participated in Congressional briefings, sat on key advisory committees (including the White House Middle Class Task Force), created and hosted webinars and podcasts, led workshops and worked with companies to enhance their brand and thought leadership in caregiving.
She currently serves as CEO of Caregiving Club and as Ambassador for the Caregiver Monday campaign, part of the Healthy Monday initiatives of the Grace Communications Foundation. She also served as Chairman of the National Alliance for Caregiving and currently sits on the local board of the Alzheimer’s Association.
This interview has been edited for length and clarity. Sherri is currently a member of Joe & Bella’s Advisory Board. You can read the first part of our conversation here.
Ben: The current pandemic brought on widespread disruption in normal life. What unique challenges are professional and family caregivers currently facing, even as we finally reenter a level of normalcy? Are there specific challenges for those who are aging at home compared to those aging in senior communities? What advice can you give to caregivers during this wildly challenging time.
Sheri: The pandemic has really both created some good and bad for caregivers. Let’s start with the bad. The Rosalynn Carter Institute for Caregivers and their Carewell Being Index found that caregivers are taking on twice as many hours a week, especially if a loved one is living at home, compared to caregiving pre-pandemic. And not surprisingly, we’re seeing greater rates of burnout. Roughly 70% of caregivers are suffering from more burnout since the pandemic began than from before. And this has been particularly hard on the younger caregivers, in that 82% of Millennial caregivers are expressing that burnout. Seeing that stress and anxiety playing out, manifesting into burnout especially among the younger caregivers, is very concerning. The pandemic has left many caregivers with even more limited budgets and fewer personal connections and resources, which has increased their levels of isolation and feeling that they’re in it alone.
Ben: Have you seen a change in how families are weighing the cost-benefit of different types of living arrangments for older adults?
Sherri: Yes, and it's a different kind of concern among family caregivers than before the pandemic. Many are worried about the safety within care communities. According to recent research, 82% of family caregivers have considered pulling their loved one out of a care community and into their own home or apartment. And currently, occupation at care communities is at an all-time low. So more of the burden of care is falling on family members now than it was before.
Ben: You mentioned that there might be some good news in here.
Sherri: There have been some positive changes too. The pandemic put caregiving in the spotlight. Society now recognizes these burdens more than before. Within corporations, the C-suite and HR department are now understanding how many people actually are caregivers. With so many people taking on additional caregiving responsibilities during the pandemic, their employers finally realize that a lot of their employees are caregivers. And they’re now asking how their employees can manage all of their responsibilities. This is leading to new corporate benefits programs. We see some instituting things like flex time, creating systems of back-up care for when the primary caregiver is tied up at work. And of course new working-from-home policies can provide caregivers with much more flexibility and ability to work while providing care. President Biden also has prioritizing passing a very robust plan to support family caregivers.
Ben: How has actually receiving medical care changed this past year?
Sherri: We’re also seeing an increase in the use of tech in health. Medicare covers telehealth now, for example. When it wasn’t covered, caregivers would have to drive their care recipient to the doctor, then drive to pharmacy, then drive back home, cook for them, hang out a bit and make sure they're ok and settled in, and then finally they can go back to work. By that time, the caregiver might have spent a full day or half day out of pocket and away from work. But telehealth cuts down on this time commitment. Caregivers got to make sure they’re HIPAA authorized. Now they can be with a loved one, in the room, and be on telehealth together talking to a doctor. Or if they are a bit tech savvy, they can connect from separate, socially-distanced locations. Caregivers can often act as the “nurse” for the doctor on the phone, moving the camera/body for the doctor to evaluate easier. This is a trend we were hoping to see continue, that’s been accelerated due to the pandemic, and that’s terrific.
Ben: I'm guessing that if occupancy at care communities has dropped, then more people are aging in place than before.
Sherri: Yes, exactly. We are seeing a trend toward more home care. Reimbursement models are changing to help facilitate this trend. But when you focus on home care, all of a sudden a family member becomes the default caregiver. The government hasn’t thought this through enough, leaving many of us overextended. Unpaid, overworked caregivers have other jobs and often their own kids to care for as well. We need to figure this piece out even if home care is the trend. It can’t be the norm for someone to be a full-time caregiver to their parents, their children, while also working a full-time job. That’s just so much for one person to handle.
And so much of caregiving requires specialized skills. We can't have nursing care and memory care go away. These communities are critical for providing adequate care when it’s impossible to provide it at home. At some point, the trajectory of a disease passes a family caregiver’s skill and skilled nurses are needed. We see caregivers try to keep loved ones at home through the whole progression of a disease. At some point, toward the end of a disease, most family members are not skilled enough to keep them safely at home. These older adults need to have skilled dementia-care nurses. Many nurses don’t even have these skills because the disease is so different than other ailments faced by older adults. As the brain atrophies, it tells the body to stop eating and drinking. Language and motor skills start to deteriorate, so you need someone well trained who knows how to keep a dementia patient hydrated and fed. We don't want to put the burden on families going alone. So there will always be a need for skilled and memory care.
Dementia caregivers spend twice as long caring than for other patients. This is going to continue to grow as more adults get diagnosed and live with dementia and Alzheimer’s.
Ben: And how about professional caregivers? How difficult has it been for them this year?
We see a lot of challenges today for professional caregivers. We know that long term care workers don't seem to have the same value in our society as the acute care workers. The nursing union is very powerful and strong. It’s connected with medical associations which helps its PR. Nurses have been heroes during pandemic, but this has not spread to caregivers. Caregivers are doing this angel work daily, for years on end, but are not seen as heroes. A lot of us are trying to change this. I just love what you're doing at Joe & Bella to this end. It's real exciting to learn that you partner with care communities and donate a portion of each sale right back to the community in the form of an Employee Appreciation Fund to celebrate these hardworking caregivers. We need to pay them what they’re worth, which is much more than they’re getting right now. People can make more money at Starbucks, and get better benefits, than a professional caregiver. Nothing against baristas, but we need to better incentivize and reward people who choose to be caregivers. Many go into this work because they have the heart for it, not because it’s a good career choice in the long-term. We as a society need to rethink our value system and recognize the importance of this role. That’s why we see so much turnover: they’re struggling themselves. They need more support, just like family caregivers. They are essential, and as our population grows, ages and lives longer, we will have to shift the narrative around what caregivers provide to society.
Ben: Do you have any suggestions for family caregivers who feel like they might be burning out and exhausted?
Sheri: Having a sense of control comes through routines. We can't control disease, like cancer or Covid, and that creates anxiety, stress and sometimes depression. It’s really hard to not be able to control certain things. Watching a loved one decline and trying to figure out how you can best help is tough. But we can react to these pressures. Create a routine that both you and your loved one can look forward to each day.
For instance, you want to make sure you have that balance in your life. So you have your own job to go to, on top of caregiving responsibilities and caring for yourself. You have to look at all those buckets as equal. If they're not, it’s a natural phenomenon that one of these buckets will suffer if you spend too much time in one of the other buckets. There are plenty of people who sacrifice too much for the sake of their caregiving duties. This results in them getting physically and emotionally burnt out, negatively impacting their caregiving on top of neglecting themselves.
So if someone does a daily video chat with their parents as part of the routine, it becomes part of a joyful activity that we look forward to instead of an additional task to squeeze into an already packed schedule.
Routine helps you - you now have an appointment on the calendar, you can’t accept another meeting, you can’t justify making an excuse to avoid it. And then you’re present and engaged; you’re happy, you're sharing. You made that connection. Just like your morning bathroom routine, you have to make these things a routine to stick. In a 24 hour window, it might not happen every day -- but at least try -- you have to find your “me time.” Carve it out and plan it. Put it on your calendar. Make an appointment with yourself. Even if it’s 10 minutes a day you’ll do X, whatever that is. Listen to a podcast, read a book, take a walk. Whatever makes you happy and gets you to unplug from your daily stressors. It’s hard to do. But you really do have time for 10 minutes for yourself. I know every caregiver can find 10 minutes, as busy as they are. And having that break will payoff for you in the long term. It will help you remain more focused and engaged during your other responsibilities.
Ben: That does sound a bit easier in theory than practice.
Sherri: None of this is easy. Sometimes you need to reach out for help. If your care recipient needs 24/7 care, find someone to cover for you for those 10 minutes. It’s possible to do, but we have to plan it. Has to be a routine. This is what my “Me Time Monday'' workshop is all about. And these breaks actually help our loved ones and they expect it. It’s not haphazard. It gives that anticipation of happiness for both of you.
As a society we have to be grateful for our caregivers, both family and professionals. As caregivers we have to be grateful for this opportunity to do this for our loved ones and get joy out of it. We need to find those silver linings because this is hard. How do we help them stay as much of a part of the world as possible and be grateful for our role in that?
And practicing that self care. When you take on the role of caregiving you now have two people to care for - your care recipient and yourself. You need your energy, stamina and a positive attitude. If you burn out you’re going to find yourself spiraling away from being a good caregiver.
I want to help caregivers realize that often caregiving becomes tasks. Tasks that we have to do to care for a loved one. We want to humanize this. It's about relationships. Tasks are a subset. We need to focus on the human element.