Dr. Joan Vernikos with Dr. Barb
Dr. Joan Vernikos retired in 2000 as director of Life Sciences at NASA, where she was both a researcher and an administrator. Initially recruited by NASA because of her expertise in stress, she pioneered research on how living without gravity affected the health and post-flight recovery of astronauts. She’s published several books on gravity, aging, and stress, including The G Connection: Harness Gravity and Reverse Aging, Stress Fitness for Seniors, and Sitting Kills, Moving Heals. When she isn’t writing or keeping herself in motion, Dr. Joan consults with organizations on product development and whole workplace design, and serves as chair of the Taksha University School of Integrative Medicine’s Institute for Space, Health, and Aging.
Dr. Barb: Our guest for conversation today is Dr Joan Vernikos, who inspires me in so many ways. Joan has been a leading researcher in health, retiring from NASA as the director of Life Sciences. She has continued to work as an author, health coach, and speaker, sharing what she learned through the study of stress and gravity and how they work on our bodies. She published Sitting Kills, Moving Heals, which continues to get well-deserved attention, and Stress Fitness for Seniors as well. Welcome, Joan, thank you for joining me today.
Joan: Thank you very much for inviting me. I look forward to it.
Dr. Barb: I think that we share a passion for science, both of us having had our backgrounds primarily in science. For me it was the science of medicine. For you it was probably a bit more broad than that. One of your books is called, Harness Gravity and Reverse Aging. Certainly the idea of reversing aging is probably a topic that Americans could be consumed by, but I’m interested if you could expand to your today knowledge and help me understand more about: What role does gravity play? And what do you mean by this idea of reversing aging?
Joan: Well, the studies I did at NASA involved the question of how does gravity, or living with minimum gravity—which is 10 to the minus 5 in space, not absolute zero, people call it zero-gravity, but it isn’t—we call it micro gravity. And the studies that we did, there were of course very few astronauts who flew, so we had good data, but few data.
So we had to do something about expanding our knowledge on ground research. When we are on the ground we have gravity around us all the time, pulling in one direction, only towards the center of the earth. But, some German and Russian scientists had developed a model—simulation model—for studying the effects of reduced gravity. By lying in bed, for example, when you lie in bed, when you stand up, gravity pulls through your body in a head-to-toe direction. When you lie in bed, it pulls across your chest. So the vertical influence of gravity is diminished to a very low level. And the changes that accompanied lying in bed for example 24 hours a day, mind you—you don’t get up at all—are very similar to those we see in astronauts. Granted, maybe a little less intense.
So we used that model, I certainly introduced it from the Russians, we used that model extensively to study the effects of lying in bed for long periods of time. In fact, you don’t need to lie in bed too long, in as little as four days, well even one day, but four days you get very significant changes and my early studies were seven days and went on to thirty days. With where we could do both provocative and monitoring observation of work, on fluid metabolism, on metabolic cardiovascular changes and responses to stress, hormonal… Whatever we could do and wherever we could get collaboration from our colleagues in the broad science community, to join us to get expertise, to join us.
That’s the studies I really did. And during one of the early studies, I happened to visit a friend’s mother in a nursing home. She happened to be Greek, didn’t speak any English, ended up in a nursing home and, of course, didn’t budge from bed and she was terrified to get up. And she declined rapidly, as you can imagine. And since I was doing these studies I went in the evenings to see her. And I looked around and many of the changes were very similar to what I was seeing in my volunteers. And that got me thinking, and I thought, well, yeah, these are age-like changes, the loss of muscle, loss in bones, the orthostatic hypertension—the loss of pressure when you stand up, balance problems when you stand up again, and coordination. For starters, reduced plasma volume of 10 to 20 percent reduction in blood volume.
I was intrigued, well, yes, fine, but obviously my subjects are not getting old in bed. Because, after all when they do say, get up and move about they recover, as do astronauts when they return from short missions in the shuttle, which in those days was four to seven days. And of course, what’s happened, to cut a very long story short, astronauts now don’t recover in many areas. After six months—we have a lot of astronauts now who have been in space for six months—one in fact lost 30 percent bone in six months—bone density.
Dr. Barb: Whoa, that’s amazing.
Joan: That is amazing. But there are a couple who haven’t lost very much at all. So it is a very interesting phenomenon and I’ve been trying to encourage my colleagues to look at their genetic code—their DNA. Because obviously, there must be a predisposition somewhere. But that hasn’t been done yet as far as I know.
Dr. Barb: So, in summary, gravity really is our friend.
Joan: Gravity is our friend. So, the conclusion I came to was, okay, in space you have minimum gravity. In lying in bed you have reduced the influence of gravity. But what about the rest of us as we get older? Well the only way I could explain it is, we use gravity less and less and less. From 20 on, when perhaps, we have peak development, to whenever we reach what I call “the risk zone,” when you start breaking bones and falling over, which, in the early days, used to be around 80, and now, unfortunately, it’s getting earlier and earlier.
So, this trajectory from age 20 to age 60, 50 or 80 or 90, when you reach the risk zone, I attribute to a great extent to reduced activity. What I call moving. It’s not exercise. We can jump to that topic in a while.
Dr. Barb: Yes, I think that’s a really, really important message you just shared. I think now, moving into that discussion, as a health care provider, as a physician for women’s health, most of my days, most of my patients, I’m trying to encourage them to improve their health and wellness, and much of my message is around exercise and trying to get them to move more. You indicate that there’s a difference between movement and exercise and I’m not sure I’ve appreciated that there’s a difference, and maybe I need to change the message I’m giving my patients. I’d be interested in having you share a little bit more about how you see the difference between movement and exercise, and how we can better inform our listeners and people like me who are interacting with individuals and trying to improve their lifestyle and therefore, wellness.
Joan: I’m delighted to have the opportunity to do it.
I discovered this as I went along, really looking back at the data and thinking it through. What became obvious to me is that the earth goes around, and as the earth goes around we have night and we have day. During the night we go lay down to sleep. And when we lie down, it’s like my bed is subject to gravity, and the effect is reduced, but it hasn’t changed, but our orientation to gravity is such that the influence of gravity is reduced. And then we have day, we have light, and we have day. And what do we do? Well what do you do when it is daylight? I’m asking you.
Dr. Barb: I start my day, and I get up, and I spend my day in motion, mostly.
Joan: Ah, you said the key word—you get up. And it is amazing how difficult it is to get audience members to come up with that simple thing. [laughs]
The first thing you do is you open your eyes, and pretty soon you stand up. And then you go to the bathroom and you make your coffee and all the other things. But from the moment you get up until you go back to bed when it’s dark again, or it’s night—you move.
And certainly our parents and grandparents used to move all day long, as a consequence of living. Because they had to move, they bent over and reached up and made beds and cleaned and washed and gardened. And went and bought groceries and walked home or rode a bicycle, or whatever. But they moved all day long and did it until it was time again to go back to bed. Our ancestors just, they didn’t have chairs, but they squatted and they stood, and they squatted and they stood and they went searching for food, or whatever they did. Once in awhile they would chase or were chased by a wild animal. But, they would build and cook and get wood to do it and so on.
So, the body is designed to move all day long. Not to sit and not just stand. Now, the literature when I wrote my Sitting Kills book, there was no research that was cause and effect with sitting and consequences. There was research that looked at diabetic predisposition and how sitting worsened diabetic predisposition. That, in fact within thirty minutes you can get an increase in triglycerides in a non-diabetic person. Which is fascinating to me, because it takes thirty minutes to see a doctor most of the time and you're sitting in that time. Or you’ve driven an hour to get there—that’s a difference subject.
You then, gradually between 2011 when that book came out and now, there have been a fantastical number of studies—mostly meta-analysis and I have my reservations about them, but they do serve a purpose. That absolutely—that sitting makes worse absolutely everything. Whether you’re talking about cancer—prostate, breast cancer, cardiovascular conditions, stroke, metabolic conditions, diabetes, obesity—you name it, it makes it worse.
Now, as an interesting bit of information, what has become even more interesting, because I used to talk about moving as the foundation of activity. Then you can add onto that exercise up to becoming an elite athlete where you really do all kinds of exercise-specific programs. But, you can’t exercise without the foundation. Studies have come out, clinical studies, showing that when you have people sitting for a long period of time, that most of us do these days, unfortunately. You might exercise once a day, but exercising once a day does not counteract the effect of sitting these hours of sitting, okay?
Even there is a study showing no exercise, mild exercise, slightly more than moderate exercise and vigorous exercise. And lo and behold, the mild-to-more-than-mild exercise is the best and vigorous exercise is not as good.
Now, it still is early days, because the studies I would like to see designed and done don’t ask specifically that question. Because one of the things I then went on to postulate, coming at it from space side, is it’s a change in posture rather than just a metabolic consequence that is the key factor. And it is the neurovestibular mechanism that is involved every time you stand up. Because you only burn 12 calories every time you stand up. And okay, those can add up if you stand up often enough. And you probably need to stand up about 36 times a day from a sitting position.
The last study I did at NASA, took volunteers, they laid in bed for four days. That way I know the plasma volume is reduced, the O2 maximum is reduced, you get insulin resistance and orthostatic hypertension, you can see all that—and you increase your calcium excretion—presumably coming from both. All that happens rapidly, within four days and probably sooner. So, I had the subjects (it was a randomized test) either stand up every hour on the hour, and that time I had them stand up for 15 minutes (which is way too much, they don’t need that) or stand up and walk. I was not, frankly, looking at the walking, how the walking would prevent the changes we saw lying in bed 24 hours continuously.
And the standing up without the walking was my control, because after all, to walk you had to stand up. Well, this fancy statistician-biased statistician who worked with me, when the results were in and the randomized results were sorted out, he said to me, “You’re not going to like this.” I said, what do you mean, I’m not going to like this? He said, “The standing is better than the walking.”
Dr. Barb: Fascinating.
Joan: So I scratched my head and I thought, oh Joan, not again. How do you come up with these unusual observations? So when we published that paper it got all kinds of awards. But I still didn’t think it really got the implication of that, because we’re so used to having to move. But the movement can just be standing up. And the standing up is fundamental. And when you stop and think about it what are we? We’ve got circulation, we’ve got neuro and metabolic changes that are going on all the time, and, yes, energy management.
So that’s what our body is made of and the water that everything sloshes around in. So you can’t look at one thing, unfortunately you just can’t. Not just bone, or just muscle atrophy or just circulation. The whole integrated system has to be looked at. And it’s amazing to me that just the mere act of standing up, for, people say, how long? You just stand up, a minute, you wave your arms around if you like, you can do whatever you want, but it’s the postural signal.
So I started looking at it as a signal, as a tuning mechanism if you will, in a sort of wild way. That the body, when it is inactive, when it is lying down or sitting down for hours, is not stimulated. And gravity was responsible for our evolution and our health, our development and our health.
So, it makes a sort of fundamental sense that if you do not provide that stimulation, what is the consequence? Well, the consequence is lose what we seek after so many years of doing that. And now we’re seeing these consequences showing up in children with strokes and diabetes and younger people and it’s tragic.
Dr. Barb: I had so many questions that we let the interview run beyond its allotted time. Look for part two to learn more about the science of health, gravity, and movement.
Jay Newton-Small with Dr. Barb
Jay Newton-Small is co-founder of MemoryWell, a national network of more than 350 journalists who tell the life stories of those living with Alzheimer’s and dementia. She received an MS in Journalism from Columbia University and has covered the White House and politics for Bloomberg News and, more recently, TIME magazine. She remains a contributor there, having produced nearly a dozen cover stories. Author of Broad Influence: How Women Are Changing the Way America Works, she’s the recipient of the 2016 winner of the Dirksen Award for congressional reporting as well as the 2016 Deadline Club award for community service reporting.
Dr. Barb: I’m happy to welcome today a woman I heard as a part of a panel at NPR just last week. Jay Newton-Small is a journalist, having interviewed heads of state and written Time cover pieces. But her most recent project is what brought her to my attention: MemoryWell, a national network of journalists who tell the life stories of those living with Alzheimer's and dementia in order to improve their care. Welcome, Jay, thanks for joining me today.
Jay: Thanks Barb, thanks for having me out.
Dr. Barb: And I’d like to start with you introducing your MemoryWell project.
Jay: Sure, so MemoryWell grew out of my experience with my father. My dad had Alzheimer’s and was diagnosed when I was still in college. And for the first ten years my mother was his caregiver, but 40 percent of those caring for people living with Alzheimer’s and dementia come under stress. And she died of a stress-related brain aneurism about six years ago.
And so I became my father’s primary caregiver. I was in my late twenties at the time and I had, obviously, never cared for anybody before. I didn’t have children so it was a very sobering moment where I grew up very quickly.
I moved my dad to Washington, DC, and eventually, unfortunately I had to put him into a home because I just couldn’t handle him myself. And when I did they asked me to fill out this twenty-page questionnaire about his life, and sitting in this room trying to answer these questions thinking, first of all, no one was going to be able to read my handwriting for all twenty pages and secondly, who remembers twenty pages of information for 150 people in that home? And so I turned in the form blank and said, “look, why don’t you just let me write down his story for you, I’m a journalist, it’s what I do.”
I’ve just been a national journalist for the past fifteen years, I’ve spent the past ten years at Time Magazine, and writing came naturally to me, it was a much easier way to express myself. I started writing down my dad’s story, it was short—just one page—and they absolutely loved it! They would share it with one another, they would, you know, regale each other with anecdotes from the story. And two of his caregivers were Ethiopian and never knew that Dad had lived in Ethiopia for four years early in his career. They would sit and show him pictures of Addis Ababa and Lalibela and my father loved it, because he remembered Addis from his early twenties, but he didn’t remember the last thirty years of his life. And he would regale them with stories about Haile Selassie and so it was really, it really transformed his care. And that’s how Memory Well was born.
Dr. Barb: So, when you were first presented with this long form of questions to fill out, were they, in essence trying to get what you, in turn, provided for them? Is this what most organizations will do, is try to get some of this background information that you are now in some form, condensing?
Jay: Absolutely, there is this effort to get to know the residents going in, and not all homes do this, I would say probably only 25 percent do, but the better ones do. So they try to get a life history to improve the care they are giving. But, you know, it’s sort of ham-handed, because, again, nobody ever reads twenty pages of information. The ones that I saw completed just gathered dust sitting by the desk. So the intent was there, but the delivery doesn’t really work.
And it didn’t work on both sides. First of all, on the side of caregivers, most caregivers in America don’t even have high school degrees, a lot of them don’t speak English very well, so the idea that these people are going to go through twenty pages of handwritten questionnaires is very unlikely. And then, from the other side, family often can take two to three months to fill these things out, because they are wrenching to do, how do you define your loved one’s marriage in five lines? You know, I remember sitting there thinking, I couldn’t begin to write down, and I’m a professional writer, and how do I define my parents’ marriage in such a short amount of space and how do I describe my dad’s legacy in six lines? And so, I think it’s a lot, because you’re so close to it, it’s really hard to sort of, write down this information and fill out these forms, it’s so much easier when a journalist does it for you, which is what MemoryWell does.
We’re a national network of 350 journalists and we’re writing the life stories of those living with Alzheimer’s, and the stories that we write are digestible, they’re really easy to read, they’re beautifully written. And the families love doing the interviews. There’s such a difference between sitting there trying to write down, here is my loved one’s marriage in five lines, versus, okay, well, tell me about your parents’ marriage, tell me about your parents and how they first met and what they were like together. And so off the top of your head conversations are just easier to do.
Dr. Barb: So for those who have a loved one who is facing evidence of Alzheimer’s, is it productive to do it sooner rather than later? Is it something that gets updated along the way? Practically speaking, how does it, how is it delivered to the loved one?
Jay: It’s absolutely better to do it earlier. We actually are developing a subscription model and this is something that we’re going to roll out in the next week or two and the reason why we’re doing a subscription model is that we found the stories to be very dynamic. They’re not set in stone. And I think there’s a misconception that people think, oh, Alzheimer’s, dementia, you’re diagnosed and that’s the end of your life and you have nothing else and you’re writing almost an obituary.
And the reality is that we’re writing a very living document for people and if people want to add to it as they go along and they want to create more and more, and so my father lived for 15 years after his diagnosis, 10 of them were incredibly normal and great and he contributed to society, he had a wonderful life with my mother, and so I think it’s important to realize that this is not the end, it’s actually the beginning of simply a new phase in life, and especially for a lot of people who want to begin to record these memories, the earlier you can do it, the better the person can tell their own story, and then also the more time you have with family members to sort of honor those stories. Our subscription model is the stories in the beginning, like the first page, and that anchors the page and takes away pressure from the family members to feel like they have to own it or that you have to tell their entire life story. That story is there, and that’s the basis of it, but then family and friends can add in, you know, Uncle Joe wants to add the time they went ice-fishing in Michigan when they were 12, or may want to add photos or videos from childhood, or the funny kind of play when they were in high school, or college memories, or there’s all different things that you might add in.
I did one for my dad and I had family and friends around the world send me posts to put into it and it was just so meaningful to me, even though at that point my father had passed, just to see all these things from his life, these photos I’d never seen before, and to collect them and put them in one place, it was really awesome.
So I think there’s a real value in doing these earlier rather than later, because you can really fill them out and create a living and vibrant document.
Dr. Barb: And it then strikes me that as you have this story of your father’s life and for you now as such a young woman experiencing his loss for your future, your children, your future children, and how much more tangible it would be to share their story beyond their death.
Jay: Absolutely. So one of the things we realized, and this was originally, obviously, a project that we did intending to help caregivers understand the people that they’re caring for, but in the years since then, we’ve realized that this is a document that not only helps caregivers but also helps family. And they, for example, family--and this actually comes through in studies.
Studies show that life storytelling for those living with Alzheimer’s and dementia not only builds empathy between caregivers, but also between family members, and so, for example, there was a woman in Chicago whose story we did and she had two grandchildren, and the grandchildren used to hate to visit her because, you know, she was really hard to engage. She didn’t know who they were, she would sort of just sit there and it was hard to get her to react, but then once they had this story, and, online again, we allow families digitally to upload their loved one’s favorite music and art and readings, to have all these tools… so they would start playing her music, they’d play her favorite movies, and she’d start to react. And they’d show her photos and say, “Grandma, tell me about sewing your wedding dress,” or “Tell us about Grandpa, who died a long time ago,” and she would begin to really react to them, and it became a game to see who could get Grandma to react, and that created meaningful bonds with grandchildren that she hadn’t had before that.
So there’s really, it becomes this legacy and a living document that is awesome and your whole family can appreciate and build on down the road.
Dr. Barb: As I’ve been thinking about this concept, I realize that I probably incorporate a little bit of it into my caregiving as a physician. I provide care, although obviously in a very different capacity, but I often will make note of a recent vacation they took, or an upcoming family reunion, or a special wedding in the family so the next time I see the patient, I can ask about it. Because there is something about sharing life outside of the clinical space that really enriches a relationship. So I can imagine the benefit that caregivers receive by having that deeper knowledge and understanding.
Jay: Too many times, and I think this is true for… many homes, homes are just isolating places. And I’ve heard from so many providers in this last three years as we’ve grown this from a project into a company how this is… they’ve only heard after a person’s memorial service all these things that they were astounded by. They’d never known this about a person, so being able to make a person human, being able to make you see them as something other than an old person that shuffles and hardly speaks and goes from A to B and they need to bathe and feed and is this responsibility into somebody who has life achievements… and somebody who you can talk to these life achievements and maybe bring them out, because you know, Alzheimer’s is regressive, so they may not be able to talk about what happened last week or last year, but a lot of them, like my dad, could talk pretty cogently about, you know, at least until the last few years of his life, about his early years and… work in Africa. He spent 20 years in Africa. He could talk about his childhood in Australia, and he could remember those really really well, with perfect clarity.
So you can really get so much out of them and you can build such amazing bonds… it’s so important, and I think, look, it’s a really dehumanizing job to take someone to the bathroom five times a day and worse when, like my dad, they tend to get aggressive and they sometimes bite or kick you. And that’s why you see, on average, 55 percent turnover of caregivers in these homes annually. And that turnover can be just so disruptive for those living with Alzheimer’s and dementia because you’re never quite sure, do I know this person, do I not know this person, suddenly they’re getting incredibly intimate with you, they’re feeding you, they’re bathing you, they’re undressing you, and it can be scary, and that’s a large reason why my dad would get aggressive because he was like, who are these strangers touching me? I would probably get the same way!
And so, I think that there’s the stories go a long way toward helping those caregivers kind of ease those people living with the disease, and ease the residents in the home, and sort of say, even if they don’t know them, give them the impression that they do, and say, hey, I know your son Colin is coming today, let’s talk about, maybe we can take you over to the golf putter this afternoon because I know you love to play golf and you used to golf all the time, and, you know, and really engage them on a personal level so they know, so they’re uncertain, do I know this person, do I not know this person, so they feel at ease, even if you don’t know them, they clearly know you, and you’re in the right place and they’re doing what they’re supposed to be doing.
Dr. Barb: Great. Yes. So you’ve also written about how women are changing the way America works, and it strikes me that this is a disease that, not necessarily from the patient’s point of view, although I think women are significantly affected by this, maybe more than men, but maybe on the caregiving side, and I’m wondering about your perspective of what it means to be caring for those people with dementia or Alzheimer’s and the impact that might have. Obviously, you alluded to earlier your own personal experience with your mother and what was seen as a premature death from the stress of being a caregiver, and do you have any additional insights into that, what it means for women, for American women, the economic impact, the social impact?
Jay: Absolutely. I mean, this is a disease that disproportionately affects women on almost every level. Not only are two-thirds of caregivers women, for those living with the disease, but two-thirds of those affected by the disease, people who have Alzheimer’s or dementia are women. So it’s a pretty big epidemic. And you see in the top 10 diseases in America, nine of them are declining, so cancer, heart disease, there’s a lot of drugs out there to treat these diseases. And they’re not being cured, but they’re being effectively treated and definitely there’s a lot of really amazing things going on with helping bring down mortality rates in those diseases.
So the one that’s really spiking is Alzheimer’s and dementia. And that’s because we don’t have really treatments that are really effective for it. [Here are some articles on the subject from Scientific American and the National Institutes of Health] There are two drugs out on the market, Aricept and Namenda, that have been proven to have slight effects; my father was on both of them. Those have been around for decades, but there’s really nothing else that’s been shown to be effective, and in fact, Eli Lilly just had a big failure of a drug that people had sort of pegged their hopes that this drug would be one that might start to turn the tide and lead us on a path that might lead to a cure, and the fact of the matter is it is unlikely given recent drug trial failures that we’re going to find a drug that, in time, to treat the Baby Boomer generation, which means that we’re going to see the population of those living with Alzheimer’s/dementia explode. From 11 million today out of the 11 million living with dementia, 5.4 million have Alzheimer’s, to almost more than triple by the year 2030. And that’s huge number of people that we’re going to have to care for and we’re going to have to find ways to not treat, because you can’t really treat, but certainly support systems to care for them.
And at the same time, you have the number of caregivers in America declining. So we’re short already 1.3 million caregivers by 2020 we’ll be short almost 2 million and by 2030 we’ll be short almost 10 million, and so barring massive amounts of new immigration, which, given this administration is very difficult to imagine, we’re going to be in serious crisis in the next 10 to 15 years as this Baby Boomer generation ages out and needs more and more care. And again, this is a burden that is almost entirely on women in this society and on older women and it is going to become a real crisis.
And not only older women, but the fact of the matter is it’s almost always the eldest daughter who becomes the caregiver, so it’s almost always going to be the eldest daughter who’s going to leave her job or reduce her work responsibilities in order to care with their parent living with Alzheimer’s and dementia, which means you’re going to see a disproportionate number of women being forced to leave the workforce, or being forced to really make a choice. They call this Generation X, and older Millennials, the Sandwich Generation because they’re going to have to soon decide, are they going to be able to pay for their child’s college, or are they going to pay for their mom’s care. And almost always their mother’s care is going to be more acute, because she might wander, she might be a danger to herself or to her family at home, and so you’re going to be stuck trying to figure out, basically… how to pay for care. And care is so expensive. People don’t realize, Medicare doesn’t pay for that stuff.
Dr. Barb: That’s a really sobering thing to think about, what the future regarding this looks like. And I know you’ve got some background in some politics, and I’m just wondering do you sense any intention or momentum around how to think about addressing some of these issues you’ve brought up? Do you have any reason for optimism that there will be any appetite to really try to figure out how to do this well?
Jay: No, in fact it’s the opposite. So Trumpcare or the AHCA, the American Health Care Act, which was introduced by Trump and the House Republicans, which is now basically dead in Congress, but if that had passed, it actually strips out funding, for example, for planning for end of life, which less than half of Americans actually have plans for the end of life. That’s to me really crazy.
So, like, what happens when your loved one suffers a stroke, do you treat that person? How long do you keep them on a feeding tube? How long do you keep them on breathing tubes, those kinds of things. Ninety percent of our health care money is spent in the last six months of life, and yet, 60 percent, actually 80 percent of Americans want to die at home, and yet less than half of them, 40 percent, die at home.
Most of them die in hospitals, and that’s because they’re having extreme measures taken to save their lives, and so I saw, in my dad’s home, for example, there was a lovely woman, her name was Betty (she would always say, “Hi, I’m Betty”) and one day I saw Betty throwing up in the garbage bin. And I was like, my goodness, did Betty eat something wrong, off? And the caregiver was like, oh, no, Betty’s on chemotherapy, that’s just her chemotherapy drugs, and I’m like, well, gosh, who would give someone with advanced Alzheimer’s chemotherapy? Betty’s quality of life was terrible, and yet…
Dr. Barb: Yes, it is so difficult. And I think as physicians, we also often miss the mark of advising families about when to discontinue care, to not move into the next level of care. So I hope that you have a voice in this arena that you’ll continue to advocate for what it means to provide proper care for these individuals. Because it’s heart-wrenching to think about what’s ahead for many families and the difficult decisions they’ll have to make.
Jay: Absolutely. Yeah. I think, you know, this is something, I look at what’s going on in politics today and it really… there are these huge crises that we’re facing, Alzheimer’s being, to me, the largest one, this massive cliff that will almost single-handedly break the banks of Medicare and Medicaid by the years 2028 or 2030 depending on what estimates you look at, and yet we’re hardly talking about it. We’re not talking about this stuff at all. We’re talking about Mika Brzezinski’s facelifts and WWW Smackdowns and we’re talking about investigations with Russia and election tampering, and the investigation with Russia is important, but there’s so much in terms of policy that’s being ignored right now, and that’s just so worrisome, and I don’t see a solution on the horizon.
Dr. Barb: Well, thank you for your insight regarding this, Jay. Tell us where we can find out more about MemoryWell?
Jay: Sure. Online on our website, it’s just www.memorywell.com. You can read some of our sample stories there, you can sign up and have your own story done for your family, and we’ve found oftentimes when people sign up you don’t have to, it doesn’t have to be that they have Alzheimer’s/dementia. They could just have a great story that they want told. It might be a World War Two veteran, or Korean War veteran, or there are so many wonderful stories, and we’re a generation that lives their lives digitally, so I know that my life is being captured all the time, but this is a generation that doesn’t live their lives digitally, and I think it’s so, to me, meaningful and powerful to help capture those stories before they’re lost. And that’s one of the great things about MemoryWell that I really love.
Dr. Barb: And in closing, I wonder if you can share with our listeners, at this point, where do you find richness in your life?
Jay: Gosh, just telling stories. It is to me, this is my passion, so you know, until November, I used my, and I still occasionally write for... journalism for Time or for other outlets, but I used my talents to write about the rich and the powerful for an audience of millions. Now I use those same skills and I tell the stories of everyday people and the audience might be 20 people, maybe 30 people, but it has such a profound impact on their lives, and it really is so meaningful to me to see the changes that these stories can bring directly building bonds between caregivers and families and it’s just really special to me.
Dr. Barb: It is a beautiful gift, and thank you for your insight into how to improve the care, the communication, and the tenderness that can come around journeying through this. Thanks for your time today, Jay. I appreciate that.
Jay: Thank you, Barb, for having me on.