BrightFocus Town Hall Event: "COVID-19 and Older Adults

BrightFocus Foundation held a virtual town hall on COVID-19 and older adults. Topics included long-distance caregiving, telehealth, social isolation, anxiety, and other issues disproportionately affecting aging adults. Please share this with a friend or family member.

Transcript:

Cecilia Arradaza (00:00:11): Hello, welcome to the BrightFocus Town Hall on COVID-19 and older adults. Thank you so much for joining us. My name is Cecilia Arradaza. I'm a long time communications and marketing professional based here in

Washington, DC. I currently work for Wondros, a global strategic creative agency that's focused on social impact and community engagement and I am a proud member of the board of directors of the BrightFocus Foundation, which is what brings us all here today.

(00:00:43): Our hosts BrightFocus for this Town Hall is a non-profit, whose mission is to cure diseases of mind and site by funding high risk high reward research for Alzheimer's macular degeneration and glaucoma. The BrightFocus is also a community... It's a community of researchers and scientists, families, and caregivers all connected by a shared purpose. So as we enter, week nine or 10 of this, social distancing reality that we're in, we're all bearing witness to such astounding changes in almost every aspect of our lives and the most vulnerable among us are at even greater risk.

(00:01:28): For older Americans the stakes are high. So in these turbulent times, I'm really exposed a lot of kind of the vulnerabilities and some of the systematic flaws that are in our health and social frameworks. And that's what we're going to be talking about this evening. This is the first in a series of virtual town halls. That BrightFocus will be hosting. And today joining me are Scott Kaiser, former family physician geriatrician, and the chief innovation officer for the Motion Picture and Television Fund.

(00:02:06): This fund supports our entertainment community and living and aging while with dignity and purpose and in helping each other in times of need. Scott also serves in the on the BrightFocus board. Also joining Scott and myself, is Art Taylor. Art is the CEO of the Better Business Bureau's Wise Giving Alliance. Art was a caregiver for his mother who passed away from Alzheimer's disease and his organization seeks to assist donors in making informed judgments about those that solicit their support.

(00:02:40): We all come at this with very personal stories and in our professional lives. And you'll hear kind of these perspectives come to bear. We have to receive so many great questions over the past few days. So first things first, thank you to all of you.

Scott and Art are at the ready to answer and if you have additional questions, please send them to us through direct message. So let's get right to it.

(00:03:07): We have heard a number of comments, an overwhelming number of comments that we got is really about this feeling of confusion and helplessness, as we all find ourselves not only distant, but sometimes isolated from loved ones during these trying times. In fact, a recent Harvard Business Review piece notice that this pandemic has not only made us feel kind of this, this loss, but really all sorts of different types of griefs, anticipatory, griefs, and one particularly troubling aspect is the open-endedness of this pandemic. When is it ever going to end? So we will start there. We'll dive right into the deep end. Scott, and then Art. What do you tell older adults and their families who are trying to find answers and clarity?

Scott Kaiser (00:03:57): Oh, that's a great question, Cecilia. And it's true. It's trying times it's unprecedented what we're going through and something that's so disproportionately impacting older adults. As a geriatrician, it's something I'm faced with directly in terms of talking with patients and families. Look, it is, there is a lot of uncertainty. So we have to really stay focused on doing the things that we know we can do to keep ourselves safe. And there is a lot of good information out there to guide us on what we can do to keep ourselves safe. And I'll come back to that later through our discussion.

(00:04:39): But at the same time, there are also a lot of things that we know about living well and aging well under normal circumstances that continue to hold true. In fact, they're probably more important than ever, like the value of social connection, the importance of having a sense of purpose, the importance of managing chronic conditions, all of these things are more critical than ever, but with so much uncertainty, there's also so much information coming at us.

(00:05:06): I was thinking about, I saw a Dr. Anthony Fauci on a show I watch, and he was just talking about all the information coming in. It's like drinking from a fire hose. I mean, it's just so much, so much because we're trying to learn, this is a global pandemic. So we're trying to learn from what's going on in other parts of the world and now other parts of the country and in our other cities. And it's just a lot to keep up with. But you know, I think for individuals tuning in now, you got to look to those trusted resources for high quality information, right? I mean, you know, if you go to the CDC website, you're going to get information that's been vetted and that's a great place to start and there's going to be great reminders. There are the things that you can do to keep yourself safe.

(00:05:54): But then when I think about people in the BrightFocus kind of universe and family, people with Alzheimer's disease and related dementia, people with macular degeneration, with glaucoma, really the bright focus foundation is an incredible resource. I mean, you can go right onto the BrightFocus website and find articles at any time about how to best live with those conditions or how to best support someone if you're the caregiver of someone living with those conditions. But right now you can log right on and see about, macular degeneration in COVID-19, in the light of times with COVID-19 what do I do? How do I respond? How do I manage my condition?

What are best practices? So really a great resource right at our fingertips. And I encourage people to go to the website and check it out.

Art Taylor (00:06:51): Well, you know I think that's a great response. And what I would add to it is that as humans, we tend to shy away from change. And if there's anything we know about the situation we're currently in is that it's different and that many of the customs and habits that we want to participate in and do we're having to put on hold. We can't do them. And we have to begin thinking, I think less about what we would be doing if it weren't for the virus and the pandemic and the challenges associated with that and what we can be doing now that can also be fulfilling and enriching in our lives.

(00:07:45): You know, so much of this virus is harmful not only because of the health effects, but because of the emotional effects associated with loss of one kind or another, when the anxiety of not knowing when we will ever get back to the way things were, but, you know, life is full of surprises. And I think that if we were to focus some on our current situation and find even within them things that can bring us joy and peace and comfort such as a phone call or, or a Zoom chat or sitting down and reading a book that maybe we put off for a long time or engaging in something less technical or something more humanistic, then I think we begin to develop new habits, going out if you can safely to take a walk. Things that you were planning to do, but you've been putting off because you've had other alternatives that you don't currently have. I think all of these things can help us as human beings cope with the sense of loss.

(00:08:59): And I think the number one thing that seniors and everyone has to do right now is avoid getting the coronavirus and we have to make sure that we are putting into place all of the habits and precautions possible to make sure that we don't get the disease.

Cecilia Arradaza (00:09:22): You know, that's a really good point. First things first is safety first, health first. What's really concerning one of the stats that as I was preparing for this conversation today, I saw from the University of Chicago that 55% of Americans, 70 plus have delayed medical care due to the pandemic. I live with my mother she's in her early 80s and I know for sure she's delayed some of her kind of more preventative medical care visits to the doctor, some of the things that you could push back. So Scott, from a geriatricians perspective, how do preexisting conditions like Alzheimer's, macular degeneration and glaucoma increase someone's risk for coronavirus and its associated complications?

Scott Kaiser (00:10:15): Right? I mean, well, there's a couple of questions there and starting with what you just commented on. Absolutely we know that underlying chronic conditions and age are significant risk factors for becoming infected and suffering the most severe consequences from the coronavirus. So this is very disturbing. We need to keep an eye on how we are really protecting ourselves if we're living with chronic conditions and the conditions you listed fit in that category.

(00:10:51): Now in terms of managing those conditions, we also have to, as Art said, number one, we have to not get infected with coronavirus. That's our first priority, but we have to be able to do both. We have to also continue to manage our chronic conditions. So look, anybody who's tuning into this should be able to access tele health services, right?

(00:11:14): And if you're tuning in and somebody in your life is living with chronic conditions and they can't help them, because right now there is a whole telehealth revolution occurring. And we want to make sure that everybody is included in that, that nobody gets left behind. So you still have ample opportunity to be able to reach out and connect with healthcare professionals through telehealth services. And I really encourage people to take advantage of that. I think people are going to really find that it's a great way to get care. You can get connected with expert care. And I think people will actually want to bring that practice into the new normal. Then there are certain conditions that cannot be managed by a telehealth. So for example, if you have macular degeneration and you need to get injections into your eye as part of the treatment for that, there is good evidence that suggests that you do not want to significantly delay those injections.

(00:12:15): You need to continue those or you risk loss of sight. So to be able to continue those, that's really incumbent upon the health care system to better organize and there's a lot of efforts underway and we need to support these in our local health systems and across the country. We need to support efforts for healthcare providers to prepare, to treat these things that sometimes we've been having to delay, if they're not immediately urgently necessary. And that means medical practices that don't necessarily look the way they look before, simple things like perhaps when you're waiting for your appointment, you might be waiting in your car and then you get a message that it's time to come in so that you can come in. When you get into the office, perhaps everybody's wearing masks and you're asked to wear a mask and people are asked to wash their hands frequently, because coming coming back to what Art said about, we can't get the coronavirus.

(00:13:14): We all have to wash our hands a lot more and that's something we should continue from now on forever. We should all be washing our hands more with warm soap and water for at least 20 seconds, right? So you go to the doctor, it might be a different experience, but we have to get that care. A lot has to happen on the backend. There has to be testing in place, there's testing of staff to make sure that they can safely provide the care. And there's testing it's patients. Say a patient needs a surgical procedure that's has not been emergent and has been delayed testing of patients before they go in to the operating room.

(00:13:51): So, this is really a lot to handle, but people are working hard every day to make this possible. It's really our ingenuity at its best. And we all have to band together to make sure that we keep taking care of ourselves and keep delivering great care.

Cecilia Arradaza (00:14:09): You raised two very important points of making sure we include everyone as we put in place preventative measures. It's really amazing to see the telehealth revolution happening. You know, these are some of the things that were seemingly aspirational. What's also really interesting is that we are consuming health data in ways that we've never done before. Every single day, we look at data and kind of health outcomes and trying to apply that to our lives. And one of the things that this data is telling us stories that may have always been there, but are now really coming to light in very stark terms.

(00:14:50): Art I'd love, turn to you as we look at just the disproportionate burden of illness and death among racial and ethnic minority groups due to COVID. I wanted to also quote Dr. Fauci, who we've already quoted earlier. His point was very poignant when he said, "This crisis is shining a bright light on how unacceptable it is, because yet again, it's not new." When you have a situation like the coronavirus African- Americans, especially are suffering really disproportionately.

Art Taylor (00:15:24): Yeah. It's alarming. And yet we also know that many people have been tracking for some time now, what are known as the social determinants of health. For many years, we would just look at people for their illness and just assume that it was the disease that might've been attacking them disproportionately or the malady was attacking them disproportionately. And then we came to realize that there are social factors that weigh into the extent to which people are at higher risk of contracting a disease, or maybe even suffering and dying from it. And clearly that is the case here.

(00:16:13): Now, what we're seeing with African-Americans and people of color and elderly, and to some extent in this case, although the social determinants may have less to do with elderly, but the problem is that people who live in predominantly poor conditions and conditions that bring less services and less opportunities for healthcare are going to be effected by any number of diseases at higher incidents.

(00:16:48): And it won't be until society comes to grips with that until we come to grips with the fact that a human life is actually worth something, regardless of where people come from, and it's not about how much money a person has, it should be about the value of a human life. It won't be until then that we're willing to deal with some of these social issues that are dragging on the healthcare of people of color. And so coronavirus, as Dr. Fauci points out is shining a bright light on the disparities that the social determinants drive in terms of the safety and health of people in minority communities, particularly those in poor minority communities.

(00:17:38): And again, we have to work as a society to remedy this and it's bigger than the healthcare system. Although the healthcare system is a major piece, but it's bigger than the healthcare system. It's, going to take bigger pieces of our collective efforts to really resolve.

Cecilia Arradaza (00:17:59): So it's like, we've never been more physically distant from each other, and yet we've never been at a time when worse, when the interconnectedness of things is upon us, right? It's the merging of our... for those who are able to work from home, you're working from home and taking care of both children and parents. It's all coming together and the shared experience allows us to connect with each others in ways that we really didn't have before.

(00:18:33): And now it's a matter of how do you kind of take that and build on that momentum and direct that energy positively. And to that point, we've been hearing demands for programs like Meals on Wheels have doubled. Locally in DC, we know about organizations like the Smith Center for Healing and the Arts creating a really robust virtual program that they haven't done in the past. So we're getting a number of questions about the need for community support systems, where can older Americans and their families turn to for assistance. And for those who are also seeking for ways to help, where can they go and what can they do? This is for both of you.

Scott Kaiser (00:19:20): Yeah.

Art Taylor (00:19:22): Well, I'll start out and just say that the need for support for the elderly and those who are less served is probably at an all time high at this point. The unemployment rate is probably triple or quadruple what we're used to seeing and that doesn't account for people who, of course were never part of the labor force to begin with. People are losing income, they're losing livelihoods. Food banks, as you mentioned, are taxed. And even government hasn't been able to meet the needs of people right now. And we're hopeful, of course, that the government will continue to be supportive and continue to find ways to help them, but charities certainly have a role to play.

(00:20:20): But I want people to understand that charitable organizations depend on the generosity of individuals. And we've seen over the last 15 years, a steady decline in the number of people who donate to charitable organizations, it's probably dropped about 12 to 15% over the last 15 years.

(00:20:46): And so clearly people are deciding at some level that there are other ways of helping rather than through charitable organizations. And I think there is a risk associated with that, but also an opportunity. If you're of a mind of a person who decided that maybe a charitable gift isn't for me, think for a minute about where some people would be, if it weren't for a food bank. Think about where people would be, if it weren't for the help of frontline people who work in hospitals many of them non-profit. Think of where society would be and you can probably see some of that now, because we don't have the services of places like YMCA's or youth serving entities, or even some elderly care places that have had to close because of this pandemic, look at the habit these things are causing on our society.

(00:21:54) So, if you take these things for granted in good times maybe now you'll get to see the pure value of them given that we don't have access to them. And I hope that today people will reconsider the significance of making a charitable donation to an organized charity. And we've posted numerous organizations on our website, give.org. Give.org where people can go and find vetted organizations that are out there fighting every day to help people.

(00:22:27): And I'll tell you many of these organizations are struggling because of the way they go about raising money. In a lot of cases, they depend on events, physical events, whether that be a fundraising dinner, a golf tournament, or a concert, or some other way of raising money through getting people together. They can't do that now.

And therefore they're going to need people to forgo the event and still give them money so that they can do the work that needs to be done to help our people.

Scott Kaiser (00:23:01): Yeah. If I could jump in here for a second, Art you made so many great points and I actually, I'd like to go back to the initial questions about health disparities and health inequities, but before, since you mentioned fundraising and the need to support these organizations, I mean, trusted organizations like BrightFocus Foundation. I know at MPTF, we have so much that we have to do on the front lines, on the back lines, on the sidelines. I mean, there's just a lot of work that needs to be done.

(00:23:36): We have a nursing home, we have social workers. We have programs targeting isolation out in the community, helping people get meals. I mean, there's just a lot of work to be done. Personal protective equipment is expensive and it's more expensive than ever. We need testing and testing is expensive.

(00:23:55): I mean, there's just a long, long list. So I encourage people yes to support trusted organizations. And you can even go to mptf.com. This Friday night, we are having a virtual telethon style entertaining, incredible program, which I encourage everybody to check out. All the stars will be coming out. And again, it's these kinds of opportunities that support great organizations doing great things. So go to our website, mptf.com to check that out, look, coronavirus, in our experience of this global pandemic have been just this massive amplifier, this magnifying glass, structural issues in our healthcare system, exposed. Shortcomings limited, a lack of investment in public health infrastructure, exposed, health inequities, and health disparities amplified social disconnection, which we were already in a loneliness and social isolation epidemic as it were before all of this, and now just amplified.

(00:25:13): So, all of these things magnified, and we could go on about how alarming it is when you really dig into the data and see these health inequities reflected in terms of who is getting sick with coronavirus and who is dying as a result of this virus. And it's very disturbing. And there are so many social determinant of health factors, as Art said that go into it. But there are broader factors even beyond that, that we're only beginning to understand, but now is the time to support organizations that are doing that work to understand what is behind that.

(00:25:54): And that's about rallying behind our scientific community who are trying to figure out not just cures, not just vaccines. We need all of that, but also the whole picture of how we can best get through situations together, best managed conditions. It all translates what we're experiencing now, the needs it, as I said, an amplification of magnification of what's going on all the time. And that's why scientists are heroes as well, just like so many other heroes right now. And we need to support them.

Cecilia Arradaza (00:26:27): You both ways really important points. Especially in times of like the coronavirus needs are amplified. They're urgent, they're urgent, unlike any kind of urgency we've ever seen before, but that doesn't mean it's not an either or for all these other diseases and other factors that are in our lives. And I think that level of recognition of life needs to continue to move forward. We need to continue to seek out that sense of purpose that drives us and allow us to keep on moving and finding kind of that sense of self and not getting lost, whether it's as we get inundated with all the information that we're absorbing all of the experiences that we know are so true and yet, so daunting, how do we cope with all of these in real time and what are some of these mechanisms that allow us to continue to keep on moving forward where do we find that energy? I wanted to have a followup question.

Art Taylor (00:27:36): You know, one of the things that we should think about is finding ways to feel empowered because what this disease and our circumstances and do to us is make us feel power less. And one of the things I do that makes me feel empowered is I think about people who are less well off than I am, and I try to do something for them. And this is something anyone can do, regardless of your circumstance. You can take something that you have, whether that be something material or a piece of advice, just a phone call you make to someone, maybe you send them a text or an email telling them you care about them, that you love them. And you'd be surprised how you will feel after you've done that. And this is all again, the reason why donating to charity is so important. Many times, not so much what the charity gets and does, although we hope they use the money appropriately and many do, most do, but it's what you get from it.

(00:28:52): You get a feeling of empowerment and a feeling of accomplishment, because you've taken something to give away to someone else who has less than you. And I just think that this is a way of coping. You asked the question, what do we do to cope? We take control of our situation to the best that we can. And even if we have less than we've ever had before, because we solve this virus. And if we can give something away, whether it's a piece of advice, whether it be a piece of some money, something material, I am sure that most people will feel better about themselves and their situation when they think of someone who has less than they do.

Scott Kaiser (00:29:36): Yeah. I think that's a great point, right? That if we think about the things that help us live well and age well. We have gained 30 years in life expectancy over the last century, which is unprecedented in human history. And even though we're seeing tremendous loss of life now, and we are in an alarming situation where we have to change so many practices and we need to really figure out a way to defeat this virus, the same elements we will still enjoy. Even this will pass, and we will still enjoy this new longevity and what are the factors that help us live well and age well? And really a sense of connection. So connecting with your community, that's always important. It's just more important now. And we have to be a little more creative about how we do it. That's how we have to use the telephone.

(00:30:28): We have to use these video conferencing solutions to be able to connect. And again, that's calling somebody, that's having an older, relative older neighbor who you don't think is getting as much contact as you would like give them a call. Call, your mother, call your grandmother, right? I mean, call everybody and stay connected. Then what else helps us really age well and thrive? Well, having a sense of purpose. And with that generosity, we know that generosity is protective. It's actually something as Art was just perfectly explaining that's so good for your health. So give right. I mean, this is a time to connect with trusted resources so that you can be part of that community and step up to support because this is where we really a make or break moment where we band together.

(00:31:19): This is our America humanity at our greatest, really stepping up to do the right thing. And that means the right thing means, supporting good scientific research to make sure that we are doing things in a smart way. That means supporting public health so that we can get out and understand what's going on, right. That means really stepping up to create wise paths forward so that we can not only get through this, but really build back better together.

Art Taylor (00:31:59): Very good.

Cecilia Arradaza (00:32:01): I love that. And thank you to both of you, because we're seeing behaviors change right now and it is pretty remarkable. The resilience that we see in families and communities in each person as we look to our own mechanisms for coping, right. But back to data that there was another NORC study that found 72% of Americans, 70 plus are spending more time on hobbies and activities to combat isolation, 61% are watching more TV and, and that like absorption of information and the ability to kind of sit still and just take it all in, never have that, that luxury and that opportunity in the past. So what do we do with it?

(00:32:48): Specifically for boomers. So there's definitely been a surge of online interests. We're seeing 138% surge in online recipes and you know, 174% surgeon career planning. And this is career planning for boomers. So it's oncore career, you see masterclasses, it is now available at our fingertips. So with all of this now, kind of like as we go into the virtual world, we also at the same time are constantly balancing the information about reopening, phased approach. What does that mean? What needs to be in place?

(00:33:25): And I'm just looking at all the different comments that are coming in and people want to know when can they visit their families again? Are they going to be able to hug their grandchildren in the next month or two? Will they need to wear masks in the presence of their own families? When is the next time people can visit nursing homes? These are kind of... We were going back to basics, that human connection that is so critical for families and people are searching for answers. So any advice you both can give on this? Any perspectives?

Art Taylor (00:34:09): I'll let Scott comment on this one because I think it is really about the science and what the data says about our safety. So I'm going to let you comment. I may have some comments after.

Scott Kaiser (00:34:23): Yeah, I mean, I think I'll start with the more sobering reality and then dig into the more uplifting side of it. I don't foresee particularly I'm dealing with older patients and older patients with multiple chronic conditions and the programs I'm involved with are targeting older people. I don't foresee any time in the immediate future that people will not be at heightened risk. This is a rapidly changing dynamic situation, so it's hard to know if things might take a turn, but current course and speed, if we look at the way things are now, the virus is still circulating.

(00:35:09): In fact, it may even be mutating into more variant, stronger forms, right? We don't necessarily have all of the things in place that we would need to be able to start circulating more safely with an a livable level of risk.

(00:35:29): It all comes back to what Art said in the beginning. We've got to figure out a way that we're not going to get this virus, and we got to figure out how to not get it and not pass it to other people. So right now that's going to mean wearing a mask. That's going to mean physical distancing. And I think physical distancing and socialdistancing don't necessarily need to be the same thing. I'll come back to that. But keeping six feet apart and avoiding that prolonged face-to-face context so that we're not sharing our droplets with somebody else.

(00:36:03): Being mindful of what we touch and then washing our hands frequently, hand sanitizer is okay, but nothing beats soap and water, warm soap and water for at least 20 seconds, right? Washing our hands frequently, we're going to need to keep doing those things. So, when will we be able to relax? While on the one hand, of course, if there are vaccines, that will be a game changer. But vaccines are very hard to develop. Thank goodness people, the brightest minds all around the world are hard at work trying to figure this out. And there are already many promising trials underway, but it's very challenging to develop a vaccine and it's not something that can just be done in an instant.

(00:36:50): It's going to take quite a while for that. So if we didn't have a vaccine, what else might get us to a point where we had a more livable level of risk? Well, reasonable treatment so that if you get it and you become infected and you can be quickly identified and you can be treated and recover without much harm, that would also change things dramatically.

(00:37:14): But again, for people with underlying conditions in a virus that seems to impact every organ system and we keep finding new reports of are there associations with COVID related strokes, heart disease every organ system, kidney failure, lung, obviously the respiratory problems. So that even if there are reasonable treatments, that doesn't mean that everybody would just get off kind of scot free and be okay. So reasonable treatments. Then the other things that will really change the landscape are if we have access to testing that's robust where people can get tested frequently so we can quickly identify cases and be able to quarantine those individuals and get treatment for those individuals.

(00:38:09): And that also is something that is not easy. It's not just necessarily widely, readily available. There are still false negatives. It's not a simple, simple snap your fingers kind of thing. So that's just the reality. So when I was advising my patients who were over the age of 65 and had chronic conditions to avoid unnecessary travel, to avoid large crowds, to stay home as much as possible, to be mindful of who they came into contact, I was giving that advice before the stay at home orders because that was the prudent thing to do for them, was to prepare and be mindful in that way.

(00:38:54): And I anticipate that that will extend for quite some time for this most at risk population. So we are going to have to really adjust. It's not just, okay, snap a finger, reopen the economy. We do need to get people back to work. We do need to get the economy back going, but for many of us, we're going to have to be on high alert and doing things very differently for a long time. So I'll toss it back to Art and then as I said, I can come back to the more hopeful side of it because I do think that we can adjust and come back stronger.

Art Taylor (00:39:35): Yeah. I just think that we're just going to have to adapt and as I said before, human beings are not comfortable with change, but we can adapt. And the things that we do today we probably would never have thought about doing 10, 15 years ago, maybe even five years ago. We can adapt and we just have to look forward rather than backwards. And so if it means we're going to have to wear masks, we're going to have to adjust to it. It will be uncomfortable for a while. I bet a lot of people who are watching today, remember life before 9/11 when you could walk up to an airport just before a flight took off with very little security. Get on a plane, go where you had to go, get off the plane, have family meeting you there when you arrived. And that was the norm.

(00:40:37): And look at where we are today. I remember the first weeks flying after the tragedy after the terrorist attack. And there were lines literally around the airport trying to get on an airplane because we didn't have the security systems in place at enough capacity to handle the traffic. And so we took hours just to get on an airplane, but we hated it and then we adapted and now it's second nature to get on an airplane after going through security and we even got better at it.

(00:41:14): We came up with new systems that made it easier for us to traverse through an airline circumstance. So there will be changes that we have to go through and as we go through these changes, human ingenuity will make it easier for us to deal with the exchanges. You just have to give it time and we have to give it the ability, give ourselves the ability to get accustomed to these things and then they'll become life as normal.

(00:41:46): But we have to look forward. Life after COVID-19 will be very different than life before. And the last thing I'll say on this is we don't have to be passive actors in the creation of the future. The future is how we make it. And we all can be actors in some way in shaping that future. And again, I don't believe that we control everything as human beings. Some things may be serendipitous and if you're a faith person, maybe some things are just preordained by God. But there are some things that we can control and doesn't mean we shouldn't try. It doesn't mean we don't have agency in what happens next in our lives.

(00:42:34): So, I would encourage people to take a look down the road rather than considering what happened before. What happened before is nice, what happens before gives us a room to reminisce and to think about a world, but it doesn't exist anymore. We have to think forward no matter how old you are, no matter how young you are, you have to live with one foot in the present and one foot in the future. And I think it's that future that gives us hope and it's the hope that enables us to get through the most difficult circumstances.

Cecilia Arradaza (00:43:13): Now that is [inaudible]

Scott Kaiser (00:43:16): I couldn't agree more. I mean look, change is hard, but we can adapt and we will adapt. And I think about issues that have been impacted so profoundly by the coronavirus like social isolation. And the fact of the matter is we created a program at MPTF where we have volunteers who call people, mostly seniors who are isolated and lonely for that lifesaving connection. And it really is social connection really is life saving. And the fact of the matter is, before all of this, there were people, older people who might go days, weeks without talking to another person, who were isolated and feeling that pain of that isolation.

(00:44:02): And we had a program that was doing something reasonable about that. But now we have volunteers coming out of the woodwork. Everybody's stepping up to do something. Everybody can empathize and recognize this situation. We all know what isolation can feel like now and now we can do something about it.

(00:44:20): So, I want us to adapt. I don't want to go back to normal. I don't want to go back to a world where people are lonely and isolated in the shadows. I want to go back and forward, go forward into a world where we work to keep each other connected.

And we can do that. And that's how we can build back better and stronger. And that's just one example. We were neglecting the needs of the scientific community.

Underfunded, under appreciated, under invested. Now is the time that we can look at scientists as heroes and we can support them and we can join hand in hand to find cures, cures in mind, cures insight for a better future. So there are just countless ways that we have to seize this moment to step up, to help each other now and to really think about a brighter future for tomorrow that we can build together.

Cecilia Arradaza (00:45:18): You know, this is incredible because as we...~ what I'm hearing you say is it's really this is active role that we're playing, going back to the empowerment that we all need to feel to be able to shape not just the new normal.

Every time I see that I cringe. It's really the next normal. It's this continuous cycle and the phases that are upon us that we just have to adapt to and figure out as we go. And I think this, to your point, Scott, it's now there's the levels of empathy that I think people are able to feel, the interconnectedness that are even stronger than ever. And I think Art, you mentioned this before, like the vulnerabilities in our system and our communities they've now come to light. They're not invisible anymore.

(00:46:14): And so it is upon us to take on that role to actively be part of the solution and whatever that might look like. And Scott, to your point about science, really taking center stage, there has never been a time where we are turning to our scientists sort of too often locked in a lab, not just looking for that next big breakthrough. Now science is hope. Whenever we talk about research it's hope it could not be more true than it is today.

(00:46:47: I know we're wrapping up on time, but I wanted to go to a number of questions that we've gotten about caregiving. Just to set the context a little bit, we've heard the numbers and the impact on nursing homes. There are 1.4 million Americans living in 15,600 nursing homes all across the country. And it's also important to consider that 83% of caregiving in the US comes from family members. So with this, how do we care for the caregivers, both our healthcare professionals as well as family members and friends who are stepping up to really kind of fill this void and delivering the kind of care that people need right now. I'd love to get your perspectives on both.

Art Taylor (00:47:42): So, I'll start just by saying we should thank them. Thank you. Two very powerful words that we should say to people who are literally putting themselves at risk, risking their lives to take care of other people. We should say thank them. Then beyond that, and this is beyond even the coronavirus challenge we're having, is that our system of supporting people who need care like that needs to be I think radically change.

(00:48:25): We had to care for my mother before she passed away from Alzheimer's and there were very few resources that you could access very easily to help. I mean, and if you're working full time and you have a parent who basically needs around the clock support, there's very little in the way of help that you can get unless you're super wealthy to deal with that. And many of us are reluctant to put our family members in nursing homes or things of that nature because maybe we've heard some bad stories or maybe we can't be comfortable with any of the facilities in our area.

(00:49:14): But you know, right now we don't really care to serve these people who have basically raised and care for us for decades. We tend to just want to house them and put them away somewhere, take all of their money that they may have earned throughout their lives and just say to them, "You're on your own." And I just think that has to change. It's something that we as a society have to look at it very differently.

And again, COVID, I think has created a crescendo of attention on this issue.

(00:49:52): And mainly because even though the people who thought they were doing right by their loved ones, by putting them into a nursing home have found in some cases that this virus has created added vulnerability that they could never have anticipated. And so we have to think, remember that we're all in this together and that no one can really escape something of this magnitude. And I'm hoping that as a result of this, we'll all come together and say, the way some people are being treated at the end of their lives is simply unacceptable for a society like we have here in the United States.

Scott Kaiser (00:50:38): Yeah, I mean, that's right. Couldn't agree more with Art. I mean, thank you to caregivers and really hats off and all the respect in the world to family caregivers that go through so much and are juggling so much under normal circumstances, but now juggling more than ever and carrying such the burden. But look, this is BrightFocus Foundation. We're supporting research in Alzheimer's disease, macular degeneration, glaucoma. These are conditions that are age associated, that have impact older people.

(00:51:14): And even under normal circumstances, people can sort of look the other way and be dismissive. And you're seeing it in the press, you're seeing it at policy levels about reopening the economy. Oh well it's impacting older people or it's impacting minorities disproportionately. So that's not okay. The reason we are banding together and working so hard to find cures to these conditions is because, hey, they're impacting people that we will all become, hopefully we all should hope to become an older person.

(00:51:47): And secondly, because we're not dismissing neglecting, setting aside older people, we're celebrating revering and caring for older people, who as Art said, gave us so much. I mean, I'm sure that Art, when you were faced with the responsibility of caring for your mother, it was obvious. There was no hesitation because she cared for you.

Art Taylor (00:52:10): [inaudible]

Scott Kaiser (00:52:10): And we need to adjust keep tapping into that and replicating that and really revere and celebrate the older people who've given us everything we have and give back to them. So if this again can be a moment as Art set a crescendo moment that can enable us to rethink our priorities, I say let's go fully in that direction. And there is no alternative from my point of view.

Cecilia Arradaza (00:52:41): You're a hero. And I'm sure I could feel my mother nodding vehemently right now. She's in the next room. So thank you to everyone who's sent us questions. I want to wrap this up with a series of rapid fire questions for both Art and Scott. So first things first, what's the one behavior or habit that you'd change post pandemic?

Art Taylor (00:53:11): I would hug people even more than I do right now and tell them that I love them.

Scott Kaiser (00:53:21): Absolutely. I'm with Art there. I mean look, I definitely it's not I'm trying to call people and tell them I love them and get on Zoom. But I look forward to getting out and circulating and hugging people. I'm a hugger, so it's the way it is. But so, so I, I'm definitely craving that kind of connection, real connection. At the same time in terms of changing behavior, I definitely think I'm going to rethink a lot of my travel. Definitely avoid a lot of unnecessary travel because it's not as good for some things, but Zoom and all these platforms work perfectly well.

(00:54:08): There's certainly a lot of meetings where I probably didn't need to go all the way across the country [inaudible 00:54:14] and there's a lot of traffic in LA where I am. That could be a little less if we all stayed home a little more. I was always an out going person, an extrovert. I think I'm going to be a little more of a home body even maybe even a little bit of a shut-in, but I'm staying home.

Cecilia Arradaza (00:54:35): What do you do to stay active?

Art Taylor (00:54:40): Oh, wow.

Cecilia Arradaza (00:54:40): Right now.

Art Taylor (00:54:42): Okay. As I might have mentioned to you in one of our previous setup calls, we're fortunate that we live in a suburb here in Southern Maryland. And around us, there are a number of really beautiful hiking trails that are very low density in terms of population. And so we like to take six, seven mile hikes into the woods and they're so refreshing to just walk up in the woods any time of year, whether it's cold or hot and just take a walk for a couple of hours, you know. And so we do that. We also just like to do... Now we're doing virtual events, but we like the garden here at home.

(00:55:26): So we'll get out in the yard and put our hands in the dirt and plant things and then sit back and look at how beautiful our yard is because we took something of nature and added some man made elements to it or man and woman made elements to it. So I would say those are the two things. We just enjoy very simple things. We like to cook and so we prepare our meals together and enjoy them. So a lot of the simple things that you can sometimes get away from, particularly when you have to commute back and forth to an office or to a workplace, you know, you don't have to do that, so you have more time to take advantage of things like that.

Scott Kaiser (00:56:13): Yeah. I also enjoy just getting out walking and just so appreciative that there's the space to do that and I'm trying to encourage patients when they can find a safe place to walk, to get outside to get that fresh air and of course just stay six feet away from others and wear the masks. But as Art had said earlier, we adjust. So bike rides, walks I'm really enjoying those more than ever and when it's really a nice moment to just stop and savor the simple things. And I'm really enjoying that time with my family out and about walking and being together.

Cecilia Arradaza (00:57:00): And my final question, I know we've touched on some of this, but if you can boil it down to really a sound bite of what do you do to stay hopeful?

Art Taylor (00:57:14): Well, there are lots of things that draw us to them and for me one of them is music. I am very musically oriented and so the great thing about music is there's so many different genres. They can change your mood really depending on the type of song or piece you listen to. So everything from classical to jazz to RnB, to country to new [inaudible 00:57:49] soul. I mean there's so much music out there that you can enjoy and will change sort of your attitude about life in a particular instance.

(00:58:00): I think the other thing is to spend some time with other people and just talk about how you're feeling. I think we can be very reluctant from time to time just to share with people how we're feeling at a particular moment. And I just think that having those kinds of conversations are really important.

Scott Kaiser (00:58:23): Yeah, I would agree. I mean, look, I'm a naturally optimistic person, but to stay hopeful now I'm really just trying to lean in, roll up my sleeves. I've seen it on all ends here. I've lost loved ones, seen people I cared for a die as a result of COVID-19 and it just motivates me only more to work harder to get through this together. Then as I've said repeatedly throughout this, there's just so many things that this is putting a spotlight on that we could do better. And so that just keeps me really hopeful and motivated to just get in there, keep working.

(00:59:12): I'm seeing collaboration like I've never seen before and that's what we need more of. Working together, putting differences aside, mission driven work together to do the right thing. And so that keeps me very hopeful.

Cecilia Arradaza (00:59:29): That's a great note to end on. Thank you Art. Thank you Scott. Thank you to all of you for joining us this evening. We hope you found this conversation meaningful. I think if there's one thing that I got out of it, it's really that we can take this active role and be empowered to shape that next normal, and that looks differently for all of us. And yet we have this shared experience now that can propel us forward together.

(01:00:00): Again, thank you. This town hall is a first in a series that the BrightFocus Foundation is organizing. A video and a transcript will be available online at brightfocus.org along with a whole lot of really great advice and tools that are informative and practical relating to diseases of mind and site and really many of the things we talked about today.

(01:00:26): So again, thank you. On behalf of BrightFocus Foundation, I'm Cecilia Arradaza signing off. Thanks.

Scott Kaiser (01:00:32): Thanks so much. It was a pleasure.

This content was first posted on: May 19, 2020
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