Caregiving During COVID-19: A BrightFocus Town Hall Event
The town hall was hosted by BrightFocus Foundation as part of its effort to provide helpful information for people with diseases of mind and sight. The lively, upbeat discussion was led by MSNBC news anchor, Richard Lui, who is himself a family caregiver. The experts were Jin Hui Joo, MD, Associate Professor, Johns Hopkins School of Medicine; Sandy Markwood Chief Executive Officer, National Association of Area Agencies on Aging; and C. Grace Whiting, JD President and Chief Executive Officer at the National Alliance for Caregiving.
They discussed the challenges currently facing caregivers across America and offered helpful advice to guide us through the coming months.
Richard Lui (00:00:00):
Hello, and welcome to the BrightFocus Town Hall on caregiving in COVID-19. Thanks for being here this evening with us. I'm Richard Lui, news anchor over at MSNBC. I'm also a caregiver for my father who has both Alzheimer's disease, and glaucoma. It is really great to be here with BrightFocus, again, to bring attention, also to learn what is new. What are some of the new approaches? What are we doing right now in the time that we're living through? I've seen the impact of these diseases firsthand. And that is why I'm proud to serve as an ambassador for BrightFocus Foundation. It's a nonprofit whose mission is to cure diseases of mind and sight by funding high risk, high reward research for Alzheimer's, macular degeneration, and glaucoma. Now, BrightFocus is also a community of researchers, and scientists, families, and caregivers, all with a shared purpose here.
Richard Lui (00:00:50):
And as we enter month five of social distancing, quarantine, shelter-in-place, we are all bearing witness to changes in almost every aspect of our lives, and the lives of our families, especially, those who need our help. So, this evening, we're going to continue a series of virtual town halls focused on the realities that caregivers across America are facing during this COVID-19 pandemic. And joining us onscreen Dr. Jin Hui Joo, Associate Professor at the Johns Hopkins School of Medicine, division of geriatric psychiatry and neuropsychiatric.
Richard Lui (00:01:25):
She is a clinician, and leads an NIH funding research project on depression, and dementia care for underserved older adults. And next to Dr. Joo is also Sandy Markwood, Chief Executive Officer with the National Association of Area Agencies on Aging, representing a national network of 622 area agencies, nationwide. Sandy is a longtime national advocate for aging issues, and a champion for ensuring that people have the help and support they need to age well at home, and in their communities.
Richard Lui (00:01:59):
Grace Whiting is also here with us. The President and CEO of the National Alliance for Caregiving. A nonprofit organization dedicated to improving quality of life for friends and family caregivers, and those in their care by advancing research, advocacy, and innovation. And Jin, Sandy, and Grace, great to see all of you. I'm going to let everybody else that has joined us, I want you to know that please let us know what you'd like to ask as well. And I'm going to try to get to some of those questions as we're through this gathering, through this discussion, this town hall.
Richard Lui (00:02:32):
Ask anything you would like. Jin, Sandy, and Grace are ready for all of those questions. And just you can do that via Facebook. And we will do our best to get to all of your questions. Those that we can't get to, we'll try to answer in another forum for you. Again, my name is Richard Lui, and I am on set right now because of the hurricane. So, any moment you see me turn away or disappear, it is because one of our signals went down, and I've got to rush off for just a moment. So, just in case that happens, I don't think it will, but that's why I'm sitting in a very different space. Well, let's start with you, Jin. How are you doing?
Dr. Jin Hui Joo (00:03:16):
I'm doing pretty well. I have to say, I think the pandemic is really affecting everyone. And everything has been disrupted. So, I've been working at home mostly, and also seeing patients from home via video, or Zoom, or something like that, and not been able to really see patients in-person.
Richard Lui (00:03:41):
And so, how are your patients reaching you?
Dr. Jin Hui Joo (00:03:44):
So, they're reaching me some of them by phone, and those who have access, and are able to set up a video or a meeting by video.
Richard Lui (00:03:53):
Yeah. Okay. Well, and I guess telehealth, we can get into that a little bit later. Certainly, part of your practice right now. Sandy, how are you doing, Sandy?
Sandy Markwood (00:04:03):
I'm doing well. Thank you, Richard. Like Dr. Joo, I'm working from home and have since March, but given the fact that the pandemic has impacted older adults, which are the client base for Area Agencies on Aging, we have been really busy helping our members readapt services, and supports that are needed now more than ever.
Richard Lui (00:04:26):
And Grace, how are you doing?
Grace Whiting (00:04:29):
I'm good. I'm hanging in there. I will say that one thing that the pandemic has done is shine a spotlight on the friends and family members who are caring for someone else. So, we have been very busy, and working from our ... I'm lucky enough that I like my husband because we're both working in our one bedroom with our dog. And so, it's been an exciting adventure in that sense, but very grateful to be able to do work on behalf of caregivers, particularly, during this time.
Richard Lui (00:05:04):
It is something else. Now, I read what your backgrounds are in a sentence. For those who are joining us are just getting to meet you, often as I'd say what's in your title does not describe everything you do. Give me a sentence that describes you. Grace, give me one sentence.
Grace Whiting (00:05:21):
I would say that I advocate to make life better for caregivers.
Richard Lui (00:05:26):
Sandy Markwood (00:05:29):
I am an advocate like, Grace, with a vision to ensure that people are valued, and supported as they age.
Richard Lui (00:05:37):
Fantastic. Dr. Joo.
Dr. Jin Hui Joo (00:05:40):
So, I'm a psychiatrist and I see older adult patients in the clinic, and I also do research and develop programs for underserved older adults.
Richard Lui (00:05:50):
Well, Dr. Joo, let's start with you first. And at the moment, you described one of the challenges you are facing, and so are your patients. Now, that we are in month five, what is the most immediate challenge that you and/or caregivers are facing for family members with diseases of mind and sight from your experience?
Dr. Jin Hui Joo (00:06:16):
Yeah, so, I think the biggest thing is the caregivers had the bottom pulled from under them. So, caregiving I see is something that requires a network of people. And if you're lucky you have family, friends, you have professional medical and social service providers. And I think because of the pandemic, and social distancing requirements, a lot of that is gone. And so, caregivers, I think, some of them are feeling overwhelmed because their loved one might have gone to a daycare during the day, or may have had some services come to their home, and now, that's not happening. And so, I think there's a lot of feelings of being overwhelmed, and needed support, and trying to find resources.
Richard Lui (00:07:06):
Yeah. What do you suggest to them who are feeling overwhelmed? What is your, well, try this, think of this?
Dr. Jin Hui Joo (00:07:14):
Yeah. So, I think the primary thing often is the caregivers do try to do it on their own. And sometimes they're a little shy, or don't know where to look for resources. And so, I think one of the paramount messages is just survey your network and see who's available to help. And don't be shy about asking for it. And it doesn't have to be sometimes big things that they can provide, but even, maintaining the relationship by phone calls, or providing some instrumental things like helping with medicines, professionals who can connect with you to make sure the healthcare continues. I think that's very important.
Richard Lui (00:07:56):
Sandy. Same question to you.
Sandy Markwood (00:08:00):
I think that often times, following Dr. Joo's statements is that caregivers really don't even identify often times as a caregiver. They're just a good daughter. They're a good son. They're helping mom, and they're helping dad. And they've really not necessarily made a full plan for how to be a caregiver. That being said, with the pandemic, even if they had a loose plan, it got upended overnight. So, it's a matter of recognizing, realizing how to cobble together a support system during a pandemic is really hard. But what we found is that community groups are coming together. There are community organizations out there to help. And also friends, and family, and neighbors to help. But it's really critical what Dr. Joo said, you have to be able to ask for help. Little things make a difference. And those little things add up. And if you don't get that help, then you can easily become overwhelmed.
Richard Lui (00:09:03):
Well, suggestion, give me a tip here, Sandy. I'm that person that isn't quite ready to ask, or don't know how to ask. And I'm sitting here in my mind running around. And I'm like, "Well, I really don't want to ask, but I know I need help." How do you get me past that tipping point?
Sandy Markwood (00:09:19):
In our neighborhood, we have a lot of older residents. And so, what we do is that when one person is going to go to the grocery store in the neighborhood, we call and ask some of [inaudible 00:09:32] elderly residents and ask them if they need anything, and we'll pick them up for them. So, it's a matter you're going to the pharmacy, can you pick up a prescription for somebody else? It's a matter of creating formal, but also informal networks to help and support you.
Richard Lui (00:09:50):
Yeah. You know what I've found from my mother who's at home by herself, and has fallen a couple of times recently, is the handyman who fixes things around the units is somebody that she knows. And I would call them up, and I said, "I know you've not had to do this before, but can you just text my mom, ask her if there's something that you can pick up for her because you're at Walgreens." Just ask, "Oh, hi, Mrs. Lui, would you ... " And it's those established relationships that sometimes you leverage to take on a different role because they have the element of trust already in place. Grace, drop the mic on us. Go ahead. What do you got?
Grace Whiting (00:10:34):
Well, I think the first thing is caregiving we think about it as something intimate and personal, but we know from the research we've done with AARP, that we're talking about 53 million Americans who are caring for someone with a disability, or an older adult. And that's roughly one out of five people. So, I think part of this is that COVID has helped people understand that caregiving is everywhere. It's a normal part of our life. And picking up on the conversation about identification, I think one challenge for us as we have this national discussion about caregiving is thinking about how do we get systems to invite the caregiver in, rather than asking the caregiver to have to stand there, and beat down the door to get access to services?
Grace Whiting (00:11:28):
And that's something we've thought a lot about, but it's particularly true during COVID. I mean, we know that a lot of multicultural communities, particularly, Latino families and African American families sometimes don't identify because it changes their relationship, or they're concerned about not being that daughter, or spouse, or neighbor, but becoming this caregiver. And what will that mean for their family? So, from my viewpoint, this is an opportunity for our health system, and our government to really step up to the plate.
Richard Lui (00:12:05):
All right. So, I think all three of you said, ask, reach out for help. It's not a big a hurdle as you might think, whether you are a caregiver or a caregiver recipient. Asking for help is an important part. And the thing about it being 53 million, that's just the family caregivers, which really means when you look at the number of families living through a family caregiving experience, it's larger than that number. It could be almost twice that number, could be three times that number. You have kindred spirits around you. One of my favorite kindred spirits is Dr. Joo. And Dr. Joo, what would you say to folks now that we're at month five? I got to tell you, I feel more comfortable in some ways, but more uncomfortable in others because we're in month five.
Richard Lui (00:12:59):
So, my father's care facility has already gone through the peak of having six or seven COVID cases, and them having to move them from one room to another. Me having to consider pulling him out even though I live across the country. I'm worried is he going to get the right eyecare? Is he going to get the right physical care that he used to? It's certainly always going to be there, but there's some comfort that we're past when we didn't have systems in care facilities. How would you talk about that Dr. Joo?
Dr. Jin Hui Joo (00:13:31):
So, can you clarify your question a little bit?
Richard Lui (00:13:35):
Yeah, now that we're five months, there's a lot of discomfort five months ago because there was all these new systems. My question to you is now that we're five months in, and we have all these systems in, what are some of the good learnings we got, and what are some things that are our new concerns?
Dr. Jin Hui Joo (00:13:52):
So, I think in the beginning, people and our country were trying to do things to contain the virus, and people were thinking that there was going to be some solution to it. And then, cases started going down. And I think there was a sense of potentially a relief. And then, I think recently in the past few weeks, as the cases have increased, people are feeling maybe resigned, and maybe a little demoralized to the fact that it's actually going to be quite longer than perhaps what we originally thought. And different kinds of problems are emerging. In terms of disrupted relationships, loved ones in memory care units, and how to sustain that. And I think people don't have the answers. And they're going by it day-by-day.
Dr. Jin Hui Joo (00:14:52):
And feeling to a great degree overwhelmed by it. But I think as what was raised, I think people are really stepping up, trying to keep the relationships alive. Definitely being innovative about how to use technology to do that. And doing very kind of out of the box things like delivering meals to their loved ones, especially, if they're a minority, a older adult who is used to that sort of thing from their family, keeping in touch by phone or video, sharing music together, and things like that to try to cope.
Richard Lui (00:15:33):
Sandy, social isolation was really interesting, month one. Month two, it got more interesting. Now, we're all like, "Okay, what are the real short and midterm effects and potential longterm effects of longterm social isolation, physical isolation?" Sandy?
Sandy Markwood (00:15:54):
Well, the issue of social isolation we've long known is a public health issue. It's a public health crisis. And this pandemic has really brought a spotlight to it. And when you look at the issue of social isolation, and loneliness for an older adult population, the statistics are extremely high. Under those statistics are really negative impacts, negative impacts that impact a person's ability to live longer. I mean, we know that people live a shorter period of time with loneliness, and social isolation. We know that they have dementia. We know that there are a whole range of physical issues that come and are very much associated with social isolation. So, when we're looking at the older adult population, they're served by Area Agencies on Aging, after the delivery of meals, social isolation is the next most critical issue, and it's growing.
Sandy Markwood (00:17:00):
And so, again, from a community service perspective, from Area Agencies on Aging, from the healthcare community, everyone is looking at ways to come together to be able to address that issue, which is very difficult during a pandemic. And as Dr. Joo said, we really are looking at what we can do from an in-person perspective, safely, but also relying more and more on technology to be able to replace those in-person visits. There's a lot of innovation though happening there. And I think that is something that I'm hoping will only grow, and evolve past and post the pandemic.
Richard Lui (00:17:42):
Tell me one innovation that you've seen that you dug, Sandy. Really quickly. In [crosstalk 00:17:46]-
Sandy Markwood (00:17:46):
Well, I think memory cafes that used to be in-person are now going virtual. We have book clubs, and social clubs, even happy hours for older adults that are now going virtual. Anything that keeps people connected, and also things that are fun that bring people together, and keep them together.
Richard Lui (00:18:09):
As we look at this growing community, Grace, and you were bringing up the latest number, 53 million. The other big number that at least I'll bring up to describe the magnitude of it, not only 53 million, before the old number was we were leaving about a half a billion dollars, right? Of economic value, annually, on the table. Is that right?
Grace Whiting (00:18:31):
Richard Lui (00:18:33):
And that's a lot of money, but now we're up to 53 million. Has that number been updated to 600 million, 700 million of unrealized economic value of these family caregivers?
Grace Whiting (00:18:47):
So, I think that's in process right now. Our colleagues at AARP do a wonderful job of putting together both our data and other data to estimate that. And I think implicit in that number though is recognizing ... I'll tell you one time we were on the hill, and we were talking to fellow policy nerds on the hill. And they said, "Well, gosh, that's a lot of money, $470 billion. The cost to replace every caregiver with a direct care worker. Why should we pay anything if we don't pay anything now?" And I think sometimes there's a misconception that even though there's great value, and caregivers are offering help for free, they're not doing it without costs. There's a cost to their own financial security, to their own mental health, and wellbeing, to their relationships.
Grace Whiting (00:19:43):
And so, I think one of the things as we think about how do we quantify this value, is that piece about recognizing we need people to take care of their friends and family. It's the backbone of our healthcare system, and our social care system. But we also, if we're going to ask them to do that, they can't do it alone.
Richard Lui (00:20:05):
And thank you for correcting me. I put an M where there should have been a B, and that's a big difference. Oh, by the way, half a trillion dollars is what I meant to say. Half a trillion lost every year, or unrealized. Dr. Joo, we were talking about social isolation a moment ago with Sandy. And there is that when you have 50 plus, when you have those who are older and at home, it can be very difficult not only emotionally, but physically as well. And those feed each other. I certainly am seeing that with my own mother. She's now been in her own apartment for five months, as I mentioned earlier, fell twice. And usually, we'd run over there, right? And we'd help her, and do things. We're not running anywhere to do things.
Dr. Jin Hui Joo (00:21:00):
Yeah, like Sandy said it, social isolation and loneliness is not to be underestimated. And older adults were isolated before, some of them. And I think the pandemic has just worsened it. And caregivers are lonely too because loneliness isn't just about who's around you, but it's about feeling like you're going through something by yourself. And I think a lot of people feel that way. Even though, you may have family members who just may feel like there is no one who can do what you're doing. And sometimes it's emotional. So, sometimes you may feel like people may listen, but they may not really understand what you're going through. And there's a sense of loneliness.
Dr. Jin Hui Joo (00:21:44):
And loneliness, I think, a lot of people have heard it's about as bad as smoking 15 cigarettes a day. So, it has tremendous physiological effects as well as mental health effects. And as Sandy said, related to dementia risk, related to depression risk, heart disease, stroke. So, it's very important. And again, important to I think recognize that seniors with dementia are at risk from this, but also the caregivers too.
Richard Lui (00:22:15):
Give me a tip. First of all, how do I notice it? And what do I do to suggest help in an okay way?
Dr. Jin Hui Joo (00:22:27):
Yeah. So, in research on loneliness, there's a researcher who's described loneliness as analogous to thirst. So, when you're feeling lonely, it's a signal that something needs to change, something needs to be done. But the hard thing is that people don't express loneliness because it may be a little stigmatizing. And it's when you can feel that someone's energy, they don't have as much vitality. They may be withdrawn. They may just not be their usual self, sleeping a little too much. And it's very closely tied to mood changes and depression.
Dr. Jin Hui Joo (00:23:04):
And even when you notice those subtle changes, because prevention is often the best thing. So, before it gets to the point where they are depressed, and they need something more, if you notice subtle changes, it might be a good idea to maybe not even call it lonely, just in a very casual and nonthreatening way, how are you doing? And just make sure that they are as open, and comfortable, feel safe with you in disclosing that. I think that's a very important thing.
Richard Lui (00:23:42):
Sandy, you're working with a lot of local area agencies. You know this space well, and what they're going through. I have only anecdotal descriptions to offer based on my own personal experience. How have they been affected? And now, they're in month five, are they better off than they were? I was described this earlier how the care facility that my father was in was running around with their heads cut off, but they were trying hard. But now that in month five, they're doing much better. How are they hurting right now? How are they disrupted longterm do you think in the way that they offer services and help to those who do need care?
Sandy Markwood (00:24:23):
Well, I think, first of all, that Area Agencies on Aging may have had to close their physical doors, but they never stopped delivering services. So, really, overnight, or within the course of three or four days, they completely turned around their whole service model from an in-person to largely virtual with in-person for the most frail. So, they [inaudible 00:24:49] having congregate meal sites at senior centers where people gathered together, which was really good, not only for the meal, but also for that social engagement factor. And with those closed, they had to go to grab and go meals that were delivered in the parking lots of those senior centers.
Sandy Markwood (00:25:07):
And for older adults who couldn't get to the senior center parking lot, they started programs where they were delivering groceries to the older adults' homes, or giving them home delivered meals. And that whole system of meal delivery has increased 90% since the COVID crisis has erupted. But then also looking at the numbers of frail older adults who really relied on area agency and in-home staff to do bathing, to do toileting, to do eating, and our whole range of very personal services that needed to be addressed, even if a crisis was going on. So, they were deemed essential service providers, and enabling them to get the personal protective equipment to be able to go into those homes safely with new procedures, to be able to deliver those very personal services.
Sandy Markwood (00:26:06):
But also, we mentioned about fall prevention, and chronic disease self-management. Those are programs that are offered by area agencies and other community groups. And those programs all went from in-person almost overnight to virtual. So, it's a matter of what they've had to do is completely readapt their programs to this new environment. And what's going to be interesting, Richard is once we hopefully get post-COVID is how these changes are going to impact aging service delivery moving forward.
Sandy Markwood (00:26:43):
Because there are now more and more older adults who realize they need community services. They're not going to go away. And if we don't get further investment in community services, federal, state, and local, then the issue is going to become we have to look at new and different ways to deliver those services. So, what I'm thinking [crosstalk 00:27:06] there'll be a more of a blend of virtual plus in-person services moving forward.
Richard Lui (00:27:10):
I was on a venture summit related to caregiving about a month ago. And they're not here now, but they're on their way, some very interesting devices that are being looked at. We're talking about a high touch industry having to move to low touch for efficiency, number one. Number two, just because what we're in right now. But I think as you said, Sandy, at the end of the day, at the end of the tunnel, things are going to be better, just very difficult right now. And Grace, one of the things, better, and talking about getting better, in the Economist, you were sharing an article about need to reform elder care. Talk about what that silver bullet is.
Grace Whiting (00:27:54):
I wish I had a silver bullet but-
Richard Lui (00:27:56):
Go ahead. I just gave you one. You got one.
Grace Whiting (00:28:02):
So, I think there are probably two things that immediately come to mind when it comes to people who are providing care to formally recognize that the caregiver is there. And that can be done in a number of ways, including them in an electronic health record, for example. There's been a lot of movement on the state level to put into place what's called the Care Act, which says, if you come in in the hospital with someone that I have to not only note that you're the caregiver in the medical record, but also provide some discharge instructions, and let you know if the patient or the person moves to another setting.
Grace Whiting (00:28:40):
So, I think just that recognition that while unpaid caregivers are really a member of an interdisciplinary care team. I think the second piece is, so I was thinking about this conversation, and the wonderful comment about loneliness being not just isolated, but feeling like people are not empathetic or understanding of what you're going through. And we saw in our data before the pandemic, roughly 21% of caregivers said they felt alone. And this is a part that was crazy to me, Richard, is if you live in the same household as the person you care for, you were more likely to say you felt alone.
Grace Whiting (00:29:24):
So, I think that piece about respite, and helping caregivers. If I had one silver bullet, it would be, let's give caregivers the behavioral health support that they need, so that they can focus on the positive parts of caregiving. Because if it was just always a drag, nobody would do it, right? But people find meaning and purpose out of caregiving. And I think being able to give them the behavioral health support, the community supports that groups like Sandy offers, so that they can really focus in on those positive moments, would go a long way to really lifting up caregivers who are in difficult situations.
Richard Lui (00:30:09):
Yeah. I mean, strangely, despite the numbers, 53 million now, right? And despite the number of families living through our caregiving experience, we still don't really accept the title caregiver nor is that well used, or understood, or accepted as I started by saying. I think that will be the beginning, potentially, or part of what you just described, giving them that care that will remove the isolation part of it. Because I think we feel as caregivers as I am, in the beginning, that you are the only person in it. And nobody talks about it publicly.
Richard Lui (00:30:52):
We're certainly living in the age, right? Where we're talking about caregiving much more than we were five years ago, and of the diseases that we're here discussing today. Okay. Since, Grace, got one wish, but she took two, or one silver bullet, she took two, Dr. Joo, what is your one wish? If we gave you a wish when it comes to caregiving in the Alzheimer's, dementia, and glaucoma spaces, what would that wish be?
Dr. Jin Hui Joo (00:31:21):
So, I come from the medical field, and so, we're very focused on the magic bullet. So, the cure for dementia, for example, or the cure for a disease like glaucoma. But also, the research that I do is very public health-oriented. And so, I really appreciate the nontechnical ways in which people maintain their health. And it's relationships, it's social support. It's having a public health system during the times like a pandemic, where you have community health workers, or peer specialists who can connect with the seniors who are alone, or even caregivers who are alone. And provide that social support that sometimes the healthcare system doesn't do the best job at.
Dr. Jin Hui Joo (00:32:09):
They're very good at technical solutions, but not necessarily the relationship building, and the communication, which is so vital. For people not to feel so lonely and to feel cared for. So, that was one thing that I would love is to have a public health infrastructure that is equally as a well-funded, and as robust as the medical system.
Richard Lui (00:32:33):
Fantastic. All right, here we go, Sandy, the big wish. Rub the magic lamp.
Sandy Markwood (00:32:39):
Well, it's a blending of what Grace, and Dr. Joo said. It would be my wish that when a caregiver took their loved one to a physician that instead of just asking how their loved one is, they would ask how the caregiver is, and that they would write them a prescription as well as the care recipient to ensure that they get both the health, and the social supports they need to do the incredible job [inaudible 00:33:10] every day.
Richard Lui (00:33:13):
Yeah. And I guess, for caregivers, it was already tough as all of you said to begin with. And now, adding this in where all of a sudden, the hurdle used to be this high, now, it's like 10 of them this high during this time. Everything just got so much more difficult. And I see it in my family is everybody attempts to do more. And I'm going to go to a question because it just came in from one of the folks that are out there. And if you got a question on BrightFocus.org, they'll get you the link to this event. It's on Facebook. You can put your questions in there. And then our super crew here will get to the answer to that. So, this question coming in from Facebook Live, it says, "How has the pandemic impacted the role of caregivers to those with chronic vision diseases like macular degeneration, and glaucoma?" Who would like to take it.
Grace Whiting (00:34:13):
Well? Can I just say, one thing that's interesting is we're talking a lot about technology as a way to provide services to people during the pandemic. But if you have issues with your vision, technology is not always accessible to you. And so, I think one of the things to be thinking about as we talk about where's the infrastructure to move everything online? It's not just, can we use the technology? But do I have access to the internet? And do I have access to accessible technology? And certainly, I would think my colleagues know more about that than I do, but that's something that just strikes me immediately is that if you can't see the screen, then it's going to be difficult to use that during the pandemic.
Sandy Markwood (00:35:05):
And adding to what Grace has said, is that what we're also finding is that though telehealth I think is evolved faster in the past five months than it did in the five years [inaudible 00:35:16]. People need help navigating that technology. And so, that I think is almost going to be a new healthcare role as we move forward. And that's, especially, important for people with limited vision, cognitive impairments, but there's a whole range of older adults that just need that level of support with technology.
Dr. Jin Hui Joo (00:35:41):
Yeah. And I would also add too, there's a huge socioeconomic component. So, I see that in my clinical practice very vividly. So, the low income patients I'm communicating by phone. And sometimes it's preference, not just access. They feel the phone is in some ways more confidential. They can take it anywhere, and not be seen. So, there's a lot of personal preference there as well, but I think that the disparities due to socioeconomic status are quite high. And so, that's something to keep in mind, I think, because there's so much focus on technology, both in the research space, and in the clinical space, because they are great supports, and we have to use them now. But I think we have to really be careful about people that we're leaving behind.
Richard Lui (00:36:33):
What do you tell the caregivers? Open to all three of you. And by the way, just the way I do panels when I've got a camera in front of them, you can interrupt each other. So, please don't feel like I'd call your names individually, just be nice to each other, and smile. Is that one of the things that's removed from caregivers is the physical touch, which is a big part of not only for the recipient, but also for the caregiver. In my case, whenever I used to go visit my father, I'd hold his hand, I would put my hand on his head because he felt very comfortable when I would do that. Now, I mean, I had to wait five months, I flew across the country. I just saw him through a window, waved to him for 45 minutes.
Richard Lui (00:37:14):
But he smiled and he looked at me for 45 minutes. And that was actually good enough. And same like saying hello to my mom, through a window. It was very strange, and sad in many ways. But for me, personally, there was pay off, there was return. I felt like she appreciated it. I felt like I appreciated it. And I think what I'd like to hear from all three of you is that when we can't have that, that showing up still is good for both the caregiver, and the caregiver-recipient. If any of the three of you can talk ... I imagine Dr. Joo you have something to say about that.
Dr. Jin Hui Joo (00:37:54):
Well, I think with older adults, I think we recognize that in-person, I don't know if the value of that will ever really be replaced by technology. And fostering and giving the other person the sense that they feel loved, and cared for, I think that's really the foundation of health. And so, the fact that you flew all across the country to just look through a window, to your parents for so long, that shows a level of dedication and love, which I think would be touching for any parent.
Richard Lui (00:38:27):
And I have to clean the windows now, but that's okay.
Dr. Jin Hui Joo (00:38:31):
Yeah. But such dedication I'm sure they completely appreciate it, and really felt loved by that.
Richard Lui (00:38:42):
But, psychologically, the same Synopsis I imagine go off in our brains as when we are there in-person as when we can't touch each other. Maybe not as good. I don't know the studies.
Dr. Jin Hui Joo (00:38:55):
Yeah. I mean, so it's different. But often, it's based on perception too. Perception is very powerful. So, if you have the perception of being cared for, if you have the perception that you have confidants in your social network, that is actually more powerful than actually having social networks. It really is all about what you perceive to be true. So, if they perceive a loving son, if they can see your face, that's very powerful as well.
Richard Lui (00:39:25):
Sandy, you wanted to say something. Oh, your mic.
Dr. Jin Hui Joo (00:39:29):
Richard Lui (00:39:29):
Sandy Markwood (00:39:30):
My stepfather is in an assisted facility, and he'll turn 97 this month. And yeah, it's-
Dr. Jin Hui Joo (00:39:39):
Sandy Markwood (00:39:39):
... He's incredible. But this has been very difficult for him. And it's been difficult for us as it is for you not being able to have that close contact. But I think as Dr. Joo said, what we've done is constant calling, letting him know when different family members are going to [inaudible 00:39:58] contact with him. He uses the computer. So, sending him information about books online, or a virtual tour of the national park system. Just making sure that we continue that contact, even if it's not in-person. And for those moments when we can only do a drive-by, and wave out the window, it's still making whatever connection we can whenever we can. And it has made a difference in his life as I'm sure [crosstalk 00:40:36]-
Richard Lui (00:40:35):
Sandy Markwood (00:40:35):
... In your parents' life, just seeing you through the window.
Richard Lui (00:40:40):
I'm for hire too [crosstalk 00:40:41].
Grace Whiting (00:40:47):
I'm thinking too that this is an opportunity. Sandy, talked about earlier how these community-based organizations are thinking about moving online. And one of the more fascinating trends I think in dementia, and dementia care is creative aging. Understanding how music, and movement, and the creative art can help people who have memory loss continue to stay connected. And there's a lot that you can do online. My sister and I, for example, we're doing Richard Simmons workout videos together, even though she's in Texas and I'm here. And so, thinking about we know that music-
Richard Lui (00:41:28):
Do you have video of that by the way?
Grace Whiting (00:41:32):
No, it was too good for video. But I think that music is a wonderful way to connect virtually, being present for someone in a way that they care. So, virtual shopping trips, or like Sandy mentioned virtual trips to the museum. And recognizing that not everything always has to be about health. You can connect about things that you're both interested in, and have other things that you're thinking about too.
Richard Lui (00:42:07):
I got to say when I give a holler to my mom, or when I did before to my father, when I was caring for him, I didn't always talk about health. I would talk about the other silly things like food, and shoestrings. There's another question that came in here. What can employers do to help caregivers? This is a big one. Don't talk [crosstalk 00:42:30] try to keep it short. Who would like to go first? Sandy, go ahead.
Grace Whiting (00:42:38):
Well, I'm hap-
Sandy Markwood (00:42:39):
[crosstalk 00:42:39]. Go ahead.
Grace Whiting (00:42:40):
Well, I was just going to say we think about this a lot. I watch way too many movies. And before the pandemic, I kept thinking about how in that movie 9 to 5 with Jane Fonda, and Lily Tomlin, and Dolly Parton that at the end, all their interventions to make the workplace more family friendly are basically the same as what we're advocating for now. And it's been a long time since 9 to 5 hit the theaters. One of the things the pandemic has done is just really highlighted the importance of offering telework, and giving people flexibility in order to manage their family responsibilities.
Grace Whiting (00:43:19):
But there's still a lot of gaps, particularly, for people who are hourly wage workers, or who are in the gig economy, or live in intergenerational households and have to go out, and work, and come back. The other thing I think is Congress has opportunities here in the HEROES Act. The COVID-19 legislation doesn't extend paid family leave to someone who may not have dependent care coverage, and the HEROES Act because of the pandemic. So, if my dad has dementia, and I have to care for him at home now, I don't get workplace protection. I would only get paid sick leave to care for him if he had COVID-19. So, I think there's a lot of complexity there that Congress is trying to solve, but it would be wonderful to see more leadership, and movement on some of those workplace protections.
Richard Lui (00:44:19):
Sandy Markwood (00:44:19):
Richard Lui (00:44:19):
Go ahead, Sandy.
Sandy Markwood (00:44:20):
No, I was just going to say in echoing what Grace said, I think that one thing the pandemic has done as she said is with everybody [inaudible 00:44:28] home, is people have seen caregiving upfront. They've seen it with elder care, and they've also seen it with childcare, and the stress of juggling those issues, but they've also seen that it can work. And so, what I am hoping as we get to post-COVID that there will be more workforce flexibility as a result of the experiences, and the productivity of caregivers during this time. But as Grace said, the other part of it is that we need to legislate changes, and we need to invest in caregivers, so that they can continue to do that work. And there's a range of advocacy that the National Alliance for Caregiving is doing, that my organization, and our whole coalition is doing. And we really encourage people to get behind that because it's so important, and it will be more important in the future.
Richard Lui (00:45:28):
Dr. Jin Hui Joo (00:45:29):
Yeah. So, I was just going to add, in the beginning, when we started working from home in March, we were naïve. And we were thinking, "Wow, productivity is going to just go up the roof, because we're going to be working from home, and we're going to have plenty of time." And then the reality hit. And it's tremendous responsibilities at home with caregiving, but I think it's also important to recognize the mental health impact of this as well. So, a lot of us aren't impacted so negatively that we have to get treatment or necessarily seek help, but I think there are very subtle changes from being, in a way, quarantined for so long, and our social relations disrupted. And so, for employers right now to recognize that, and to accommodate employees, I think is important.
Richard Lui (00:46:26):
A really great study that all of you know about and have read is the Harvard study on the impact of business. And it generally will affect in the caregiving dynamic, those that are more difficult to hire, and those who will cost the organization higher amounts of cost because they tend to be older, tend to be more experienced. They're harder to find. So, go out and look for that study, it is chock-full of data that you could potentially bring to your ERG, your BRG, your supervisor, your close-knit group, your rabbi, whoever it is that is in there in your work that you have.
Richard Lui (00:47:04):
Another thing I found is that an opportunity I think for those who are thinking about how to bring your organization into the space is to consider starting either an ERG, BRG, or a subunit of an existing ERG or BRG of caregivers. It's a safe place. Don't let it be a place that's about creating new laws, new benefits, or anything, or new regulations, just have it to be there. That you're there to talk with each other about being caregivers. And I think that's the first step of awareness. And the conversations will come out. And I think that's a good place in your organization to try that.
Richard Lui (00:47:46):
It'll turn the battleship, right? Little by little. So, that's one idea. Let me get to some more questions, and you can just raise your hand if you'd like to answer it. And there's a comment here, it says, "My IHSS care providers are scared of navigating EVV in California." Maybe one of you knows what that is. Another question is, "What resources new or existing are available for caregivers during the Coronavirus outbreak?" Two questions. Who would like to handle either one of them? Just raise your hand. (silence). Just raise your hand.
Dr. Jin Hui Joo (00:48:34):
There were a couple of acronyms in the first question, which I didn't understand. I wonder if anyone knows what they meant.
Richard Lui (00:48:42):
I don't. They may be coming over, my ear's talking to me. So, let's go to the one about the resources, new or existing, available for caregivers during the Coronavirus. Who would like to handle that question? Please raise your hand. Okay, thank you. Go ahead.
Sandy Markwood (00:48:57):
Well, I think there actually are a number of different types of resources that are being developed and more every day. But on the engaged national resource, which is to promote social engagement of older adults, there are resources out there, and links to lots of different activities that really promote the social engagement of the loved one, the caregiver as well. And so, that's one resource. AARP's Connect2Affect has a lot of resources that are out there. The National Alliance for Caregiving just came out with their caregiving in the U.S., which really gives you all the wonderful statistics about caregiving that Grace has mentioned.
Sandy Markwood (00:49:47):
But the Caregiver Alliance Network has information on their website. So, after this, I'm sure that BrightFocus Foundation will have a list of resources. But we'll be happy to give those to you because they're out there, and they're consumer-oriented, and they're ready for you to use.
Richard Lui (00:50:06):
Got it. We have five minutes left. And so, I'm going to throw these questions out. Please try to answer them as fast as you can. I may end up even cutting you off, gracefully, of course. This question, what is happening to clinical trials for diseases like Alzheimer's now? Are trials still enrolling patients? That's one question. And another question to consider is ... This one's about caring for kids with special needs, and needing support, not having enough support right now. So, react to any one of those. Who would like to speak? All right, [crosstalk 00:50:39] Dr. Joo.
Dr. Jin Hui Joo (00:50:40):
So, I can comment on the clinical trials. So, there's been a huge disruption of them, of course. I know in my experience at Johns Hopkins, we halted clinical trials or any in-person recruitment, and any in-person activities in large. And we just recently resumed with a lot of safety precautions. And then there were a lot of tears. So, if there was research that was really to the benefit of the patient, and there was harm to the patient if the clinical trial didn't continue, then those might have greater priority. So, because of all the precautions, and the safety measures that we had to take, and to put into place, it was disrupted greatly. And I think right now, the other part of it too is the recruiting is difficult.
Dr. Jin Hui Joo (00:51:31):
And older adults, specifically, if you do research in older adults, some of them may be fearful of leaving their home, and be very reluctant to participate in a study. But they are continuing. And so, there's encouragement in that. And I think we're going to weather the storm okay. But it's definitely been significantly impacted.
Richard Lui (00:51:55):
I want to add a question to the questions, which was asked earlier, and that is, "If I have a loved one in a care facility that has COVID patients, what should I do? Should I try to pull out my loved one or not?" I know this is a big question, but I wanted to get that in there too. Who would like to address any one of those questions? Sandy-
Grace Whiting (00:52:15):
Richard Lui (00:52:15):
Okay. Thank you for raising your hand. Oh, okay. Go ahead, Grace.
Grace Whiting (00:52:20):
I was just going to say on the special needs question, and this is a similar issue to the question you just asked, Richard, which is that for a lot of people, they get support for kids with special needs through the school system. And as you know there's a big debate right now from community to community about support through the school system. So, I think the first step is to reach out to the school system, find out how you might get access to some of the support services you normally would, check in about your individualized education plan, and those types of accommodations. I think the other piece of this is a lot of people may be sandwiched between caring for an older adult, and caring for kids, or caring for special needs kids at home.
Grace Whiting (00:53:10):
And so, reaching out to the local lifespan respite coalitions. And there's a wonderful group called the ARCH National Respite Coalition that collects information about respite care providers, and connect in with them, and see what might be available. And then, I'm going to toss the football to Sandy for the other question.
Richard Lui (00:53:32):
Sandy Markwood (00:53:33):
Richard Lui (00:53:33):
... What do you tell them about maybe pulling out their loved one or not?
Sandy Markwood (00:53:37):
Well, as I said, area agencies across the country, a number of them have been outreached by families that are looking to do just that. And I think the issue becomes you have to recognize that, especially, if your loved one has dementia, that any disruption in their living circumstances is going to be majorly disruptive to their cognitive abilities moving forward. I think the other thing is trying to recognize how much care they need. If someone needs 24/7 care, and you're wanting to move them home, are you going to be able to provide 24/7 care? And getting in-home service workers right now is very difficult given the Coronavirus.
Sandy Markwood (00:54:21):
So, you need to look at what services and supports you're going to need, how you can pull those services together. But you also need to look at the environment that you live in, and recognizing that your environment may present safety issues for your loved one. And so, you need to look at services. You need to look at their medical condition. You need to look at the physical condition. And then, before you make that decision, and it's a big one. And certainly my heart goes out to anyone who has a loved one in a facility with a Coronavirus crisis going on. But you need to weigh whether your ability to be able to meet their needs should you bring them home.
Richard Lui (00:55:05):
Yeah. Will the caregivers that you bring into your home also have the ability to be tested, right? Because you're essentially bringing in more variables to your very own home. And one of the things that worked for us is that we instead became the cheerleaders for our care facility. And we said, "How can we help you? What do you need? Can we bring in air filters for his room?" We bought lunches for them. We really do appreciate the tough times you're all going through because it is not easy. It's not easy, but the three of you make it easier for all of us. We're going to finish with a rapid fire, a lightning round. And then, I'm going to ask you to do your caregiver TikTok dance if you got one, all right? And I warned them ahead of time. Don't worry those who are watching this, they knew about this.
Richard Lui (00:55:56):
But I'll start with the rapid fire. And I'll say the question, and then I'll say your name. And please answer in five seconds or less. What's the one thing that you would change post-pandemic? What's the one thing you will change the way you do things post-pandemic? Grace, five seconds.
Grace Whiting (00:56:18):
More Zoom meetings.
Richard Lui (00:56:21):
Dr. Jin Hui Joo (00:56:23):
I'm going to pay attention the importance of relationship, and building that in my clinical practice, and my personal life.
Richard Lui (00:56:31):
Sandy Markwood (00:56:32):
Having caregivers recognized in the healthcare community.
Richard Lui (00:56:36):
All right, great. Oh, following the rules. When a vaccine becomes available, and you are protected from the virus, what's the first thing you're going to do? What's the first thing you're going to do after the vaccine happens, and you're protected? Dr. Joo, five seconds.
Dr. Jin Hui Joo (00:56:50):
So, I've not been able to go to any movies. I'm going to go to a lot of movies in the theaters.
Richard Lui (00:56:55):
All right, Sandy.
Sandy Markwood (00:56:57):
I'm going to have the biggest party with all my friends, and family. And I'm going to hug each one of them.
Richard Lui (00:57:05):
Grace Whiting (00:57:05):
Visit all of my family, and give them a hug, but not too many hugs [inaudible 00:57:09].
Richard Lui (00:57:09):
There's a story behind that, I'm sure. What do you do to stay hopeful, and inspire others to be hopeful? What do you do to stay hopeful, and inspire others to be hopeful? Sandy.
Sandy Markwood (00:57:22):
Every evening, no matter how late I stop working, I go for a walk, and I make a mental list of everything that I'm grateful for. And there's a lot.
Richard Lui (00:57:33):
By the way, there are gratitude apps for those who want to try it out. And I'm doing it because I'm doing this project, and I started to use. I was like, "This is actually cool." So, check out those gratitude apps. Grace.
Grace Whiting (00:57:49):
I think really listening to some of the caregivers that we work with, and just appreciating the stor ... I've always liked to hear people's stories, and that helps.
Richard Lui (00:58:01):
Yeah. Dr. Joo.
Dr. Jin Hui Joo (00:58:03):
Yeah. So, I'm a clinician. So, a lot of people with problems and medical conditions come to me for help, but I see a lot of resilience despite how much they're suffering. They may not be necessarily curious, but they get better.
Richard Lui (00:58:17):
That's great. All right. And we're going to end with a bang here. On a countdown, five, four, three, two, one. And then for five seconds, if you haven't figured out your TikTok caregiver dance, you're going to make it up right now. So, you all three ready?
Sandy Markwood (00:58:34):
Dr. Jin Hui Joo (00:58:35):
Richard Lui (00:58:35):
Okay, I'm going to join you. So, don't laugh. Five, four, three, two, one, go. All right, we did it. And that's for all you caregivers out there. We wanted to finish on this great evening of Tuesday in a very important way for all the caregivers out there. In New York, we are out there for our frontline caregivers, and we make noise at seven o'clock. This was our little noise here, us four, wherever we're at. So, thank you, Sandy, Grace, and Jin. I cannot thank you enough for spending the time. I learned a lot.
Richard Lui (00:59:20):
I really enjoyed speaking with you. I appreciate you sharing your insights, and experiences with the viewers here today. This concludes our discussion during this time, the second in the series of BrightFocus Town Hall Program. The conversation, and the tips, and the dances, tonight, were recorded. And the video, and the transcript will be made available. And you can go to BrightFocus.org, BrightFocus.org, along with additional advice, tips, and tools related to diseases of mind, and sight. So, thank you all for joining the BrightFocus Town Hall this wonderful August 4th, 2020. Thanks for being here, and have a good night. Thanks again.
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