"It's powerful to capture those stories before they're lost."

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.

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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.