Journalist Greg O’Brien on Chronicling His Life with Alzheimer’s

Episode Transcript

Dr. Correa:
Welcome back to the Brain & Life podcast. This week, we're including a new segment. We want to hear from you, if you want more highlights on brain and nerve science news.

Dr. Nath:
In one minute, we'll share headlines and updates about our community, and some of the latest brain and nerve science.

Dr. Correa:
Starting off, reminding us how similar we are and how amazing the brain is. Whether we are speaking Turkish, Norwegian, or Japanese, your brain's language networks look the same. In a study of people from 45 different language backgrounds, a team of MIT neuroscientists found similar patterns of brain activation and language selectivity in all of them.

Dr. Nath:
Need help finding relief from the heat? As many countries across Asia and Europe have and hit with an intense heat wave, high temperatures can leave us groggy and slow and in an extreme cases might even lead to permanent brain cell damage. The Brain & Life website includes articles with tips on ways to beat the heat, manage sleep in the summer, and how to avoid the impact of heat if you have a neurological condition.

Dr. Correa:
I miss my pets when I'm at work, but a study reinforces the importance of our furry family for the health of our brains. In a current issue of the Brain & Life magazine, our team shares an article about how pets may be good for brain health. In a study presented at the American Academy of Neurology's annual meeting this last April, Dr. Braley discussed how owning a pet may slow cognitive decline in older adults.

Dr. Nath:
That's your brain and nerve health news update. Now for this week's episode.

Dr. Correa:
So Audrey, what do you think it would be like to look inside someone's brain?

Dr. Nath:
Oh, oh, this is fun. Oh, like Magic School Bus, maybe. From the 80s and 90s, but my kids are watching it now. Where you get really small and you can go inside the brain and explore neurons. That would be cool. Or I guess the closest thing that we have to that is imaging, with MRIs and functional MRIs to see what's active as we're thinking of different things. That's as close as I can come. What do you think?

Dr. Correa:
And we take metabolic pictures of people's brains.

Dr. Nath:
Exactly.

Dr. Correa:
You did a whole PhD on a lot of this kind of work.

Dr. Nath:
It sure was.

Dr. Correa:
This episode, we take a different perspective. We spoke with Greg O'Brien. He's an investigative journalist, who over the years contributed to many different publications, including the Associated Press. And he takes his very unique set of skills as a reporter to share with us an embedded experience, knowing early on that he had a gene high risk for Alzheimer's, and then living with Alzheimer's.

Dr. Correa:
He put that into several articles and books. And now most recently, he worked with a friend on a documentary, really describing and documenting his perspective throughout the course and the challenges that he's had.

Dr. Nath:
Wow. So we can actually watch the movie of his life, from his brain, telling us about his brain.

Dr. Correa:
On top of that, Alzheimer's impacted him and several family members, including his mother and father. So he grew up with Alzheimer's being a part of their family from early on.

Dr. Nath:
That makes sense, since they all seem to carry the gene, right? I think there's a lot of families out there that are going through something like this. I'd love to hear his experiences through his own words and eyes.

Dr. Correa:
It's really amazing. And I'm looking forward to everyone joining us on this podcast.

Dr. Correa:
Today, I'm joined by award-winning career journalist and film producer, Greg O'Brien.

Dr. Correa:
You and your family have experienced the tragedy of Alzheimer's taking away multiple family members and their memories. And now, more than 10 years, after your own diagnosis of early onset Alzheimer's, you've been taking a detailed note and perspective, and embedded in the condition. And this includes both your recent book, On Pluto: Inside the Mind of Alzheimer's. And then now, this newly released documentary, Have You Heard About Greg? Thank you so much for joining us on the podcast and opening up to all of us about what it's like to live with Alzheimer's.

Greg O'Brien:
Well, it's an honor to be here. And I feel more comfortable knowing that you're from the Bronx, where my dad, who died of dementia, grew up. And my mom, who also died of dementia, was on the Upper West Side of Manhattan. That's where she grew.

Dr. Correa:
As you mentioned, both of your parents, your mother and father, and then also in your family, your grandfather and uncle all dealt with dementia and Alzheimer's. I often like to start a discussion getting to know and talk with our guests about their life before neurologic condition entered it. But it seems like for your family, multiple family members suffering from dementia and Alzheimer's, has there ever really been a time in your life or your family's life where dementia wasn't present and impacting your relationships?

Greg O'Brien:
Part of the disease, doctor, is denial, early on. A chapter in my book, On Pluto, there's a Mark Twain quote, it's headlined, "Denial ain't just a river in Egypt." And it's an excellent question you ask, because my journey has been to try to bring this disease out of the closet, with an early diagnosis. I ended up with a diagnosis that, first of all, the experts ... and I deal with a lot of them around the world. And you probably know this as well, Harvard and so forth. Will tell you there are always exceptions. In general, Alzheimer's is a disease that can run 20 to 25 years. It's like a death in slow motion. I could have another 10 years, which I hope I don't, on this journey. Because I had front row seats for my maternal grandfather, my mother, my father, and paternal uncle of how this demon works.

Greg O'Brien:
I saw this horror firsthand. And then I recognized symptoms in myself. Short term memory loss, seeing things that weren't there, loss of place, loss of self. I couldn't multitask as a journalist anymore, or take care of my parents. And I sought help from doctors. I have a lot of good doctor friends, and they connected me with clinical tests and brain scans and SPECT scans. And I went through the whole thing and came out with a trademark diagnosis, early onset. And then I had the gene test, and I carry the APOE4 gene. It appears to be on both sides. I'll never forget being in the neurologist's office and getting a diagnosis that I knew was there. I found it comforting. If you want to fight an enemy, you have to know who the enemy is. And I was out of my mind with fear. And finally knowing who the enemy was, there was a comfort to that.

Greg O'Brien:
But I remember my wife was sitting next to me and gets emotional. The tears started running down my cheeks and I grabbed my wife's hand, Mary Catherine. And I said, what about the kids? And as you know, Doctor, this disease is about the kids. We don't have a cure now, and my train has left the station. But what I want to do is to spend time, while I can, about the kids. Your kids, my kids, my grandkids. Because the early diagnosis can help you with strategies and medication.

Dr. Correa:
Yeah. So it sounds like one of the first lessons you learned from this condition and through your family was starting that conversation early with those you love. It sounds like your mother just didn't really have that opportunity until later and struggled with it silently.

Greg O'Brien:
She was a hero of my life. I love my father too, obviously. But she was a banker. Raised 10 kids. Was a school teacher. One day ... which I have my notes here. She asked me to go to the ATM because once a year ... she never used it. You have to try to take something out so it registers. She starts crying and she said, I can't do it. And I did it. And I helped her. And then she sobbed in my chest and started telling me about what was going on. And she was afraid to talk about it. And in a second, my relationship with my mother was healed.

Dr. Correa:
Were there other lessons that you felt like you learned from your mother or father and your maternal family members that lived with the condition about Alzheimer's and their struggle with Alzheimer's?

Greg O'Brien:
Yeah. Persevere, persevere. Fight it. Talk about it. Get it out into the open. I serve on the Us Against Alzheimer's board in Washington, DC. I'm a advisor to the Cure Alzheimer's Fund of Boston. And I've done a lot of work over the years for the Alzheimer's Association. If you go on Us Against Alzheimer's website ... for anyone that's listening. And you Google Us against Alzheimer's and brain guide and brain health, that will give you some heads up on how to fight this early on.

Dr. Correa:
What are some of the things that you have found that help you day-to-day, manage with everything from mood and the other symptoms that have come with your condition?

Greg O'Brien:
You have to get the right sleep. You have to eat the right diet. Dr. Tanzi will tell you, just looking at it here, Mediterranean diet. You have to try new things. You have to fight against withdrawal. I've been withdrawing, doctor. There's not a lot of people I want to be around anymore and I have to fight against that.

Dr. Correa:
So by withdrawal you mean like isolating? Fighting against isolation. Okay.

Greg O'Brien:
I want to be careful how to say this, but even around family. I'm uncomfortable at family reunions. Even with my own family. My brain is like my iPhone, still a sophisticated device, but has a short term battery, pocket dials, and can get lost very easily. Let's say I go into a room where there are a bunch of people that I've known for all my life. 70%, I won't know who they are, but I'll know they're a person of interest. I'll work the room, shake a hand, look someone in the eye and say, how are you doing? How's your family? Have no clue who they are. And I'll walk out and I look for an exit door. And I work the room and then I go sit by myself for an hour and a half.

Greg O'Brien:
And people in there don't know. And they go, oh, I saw Greg. He looked so good. And he sounded good. And little did they ... this is what people need to know about this disease. It's isolation. I'll be sitting by myself. I won't be feeling bad by myself, because I'm more comfortable sitting by myself. Does that make sense?

Dr. Correa:
Yeah.

Greg O'Brien:
I'm not out there sobbing. I'm just sighing. Boy, that was good. I'm glad I escaped.

Dr. Correa:
And you said you've developed some of your own cognitive reserve from the work that you did over the many years with your journalism and your writing. What were some strategies that you learned as a part of your training and journalism and in your practice of writing that you feel like come into ... as a resource for you day-to-day now?

Greg O'Brien:
First thing is take good notes. And so when I got my diagnosis, I was worried about a lot of the stuff that I would forget, and a lot of it I have. But I spent time with not only research on the disease, but information that I had, anecdotes, family stuff. About close to 2,000 pages of notes from which I wrote On Pluto. And everywhere I go ... you're interviewing me on my MacBook Pro. And so everywhere I go, I take notes. You'll never really see me ... because we don't see each other. But without my laptop.

Greg O'Brien:
Someone says something, I write it down. I put it into categories. And then with emails, I save the emails because it gives me background on things in the past. So in my inbox, how many emails do you think I have saved? I'm looking at it right now.

Dr. Correa:
I would say, like 9,000.

Greg O'Brien:
423,000.

Dr. Correa:
Oh my God.

Greg O'Brien:
I swear to God. I swear to God, if there's a way I could take a picture of it, I'd send it to you. And it goes back to 2006. So it's a strategy. If I need to find out something earlier in my life, I can go up to the find button and I play ... for anyone who's listening or cares. I play charades with Google. Because when I write ... and I couldn't write Pluto today., just my mind's not in that place. I write columns, shorter writing.

Greg O'Brien:
So if I'm stuck on a concept or a word or something else, I can't think of the word, but I'll have a general sense of the concept. And I play charades with Google. Sounds like, and then all the things come up. And then I hit another one, all the things come up. And I can spend 20 minutes on that for a single concept. And it's very frustrating. But at the end, I felt I won.

Dr. Correa:
And you mentioned a few times, your book, On Pluto: Inside the Mind of Alzheimer's. Why On Pluto? And tell us a little bit more about what's in that book that can help a person living with it or a family member living with Alzheimer's?

Greg O'Brien:
Well, I'll tell you how I got the name. When it came to writing, I kept thinking, okay, I got the notes. I should write now. And my mom had a strong faith and she taught me how to write and speak from the heart when the mind fails. That's a difficult concept for people. When I write, I don't put a headline on it, I just write and then see. I say, well, what do I call this? And all of a sudden, in my heart I heard, On Pluto.

Greg O'Brien:
And so I started Googling On Pluto about the desolation and the isolation of Pluto. And I said, that's a perfect title, On Pluto: Inside the Mind of Alzheimer's. And so the film, Have You Heard About Greg, as well as On Pluto, is a candid, detailed look into the reality of this disease. But also offers faith hope and humor in how to survive while we can.

Dr. Correa:
And you mentioned some about the hope and humor, living with this condition. What are some of the things that we're looking forward to the future or for yourself in terms of hope, and then humor?

Greg O'Brien:
Hope is not giving up. Lying down and wrestling is a position of defeat. Hope is saying, okay. I got issues, but how can I make chicken salad without mayonnaise? Hope is realizing that there are people out there that are really hurting. This afternoon. I'm interviewing a very close friend of mine who has ALS. When I go to church, I'm sitting there, I'm not worried about me. I'm worried about him, praying for him. And you look and try to give hope to other people and try to reach out to them. That gives you purpose.

Greg O'Brien:
I don't know if that makes sense to you. But it's just like, I was a baseball player in the ninth inning. You're down by X number of runs, and you got to final at bat. And you say, okay, we're going to win.

Dr. Correa:
And you've done a lot of work to help talk about the condition with the larger community. I'm interested and wondering, how did you start that conversation with your wife and your kids when it became clear that you had Alzheimer's?

Greg O'Brien:
That's a good question, which I've written about. My wife was with me when we got the diagnosis. After all the tests, and confirmed everything. The doctor said ... neurologist said, "You got to do a couple things. You can't own anything. You got to go see a lawyer, turn everything over to your wife." Which I did. I had to give up, instantly, everything. And then he said, "You got to talk to your children. And then you have to talk to people as a writer. You got to talk to all your editors. So all the people you ... they need to know."

Greg O'Brien:
And I did. But I started the process of talking to the kids, which was hard. I called them all home, under the guise that we're going to go to dinner ... my notes here. And so I'm in the bathroom, like Luca Brasi in The Godfather, preparing my speech. And the kids are going, where is he? And calling, daddy. So finally, I came out. I said, "Daddy has something to tell you." And I said, "With Poppy and Gam both gone, you saw the disease. I've been diagnosed with that disease." And my son, Brendan, who's a writer-producer now, he's in his late 30s. This was years ago. He said, "Well, that explains a lot, Dad."

Greg O'Brien:
And the kids were all worried because they had seen things, and they didn't know what it was. But this is like other people who don't tell their kids because they're afraid the kids are seeing it and they're worried about it. And so we went to dinner after that. Oh, and my son, Connor, God love him, the youngest. He said, "So you're losing your mind, Dad?" He just was trying to be funny. And all of a sudden, the humor came to me. I go, "Yep, that's it. Let's go to dinner."

Dr. Correa:
And you mentioned that through the testing, you found out that you had one of the genetic causes for early onset Alzheimer's.

Greg O'Brien:
Right. APOE4, the gene.

Dr. Correa:
That's right. Have you talked with your family and sons and children about whether or not they want to have testing? How have you had that family conversation?

Greg O'Brien:
That's a very good question. My daughter, Colleen, before she ... she's married. Three grandkids. Lives in Baltimore with her husband, great guy. And she asked me, Daddy, should I get tested? And I said, first of all, there's no way right now to tell whether you have it. And you can walk off a sidewalk and get hit by a bus. So I told her not to. Now, I might feel differently. But she's still concerned. She's in the process of going through John Hopkins, in Baltimore for tests. And my other son now has talked to me, my younger son, about wanting to get tested.

Greg O'Brien:
I think the testing now is good. And I would recommend anyone who's listening, if they're concerned about symptoms, go get a clinical test. And because there's a lot of help. Don't go through what my mother did, and other people did, hiding this for 10 years when there's strength in numbers. And that's what I would advise. So now I'm fine with my daughter getting tested, and I'm fine with my son, Connor, getting tested.

Dr. Correa:
They're doing it through one of the centers, so they're also having that more detailed counseling discussion about what the testing means. I think that's a very important aspect.

Greg O'Brien:
I always tell people, don't do this trick at home. Go to a neurologist who does this professionally.

Dr. Correa:
What are some of the most unexpected aspects of Alzheimer's that you've only become aware of from inside?

Greg O'Brien:
There are times when my brain just shuts down without notice, and that's when I go into tremendous rage. And there are times when I can feel it coming on. It's almost like being out on the water, say Cape Cod. And in the distance, you see the fog coming in. And you turn the boat around and race to safe harbor. And I can feel at times, the fogginess coming up the back of my neck, over my head, and into my forehead. And that's a slower thing. So it's like someone turns the light off, and sometimes you can feel it coming on.

Greg O'Brien:
And I have used the analogy about the light going off. I ask people when I speak, how many people have lived in a house with a basement? A lot of people raised their hand. How many people have done their laundry in the basement? Raised their hand. How many people have been in the basement doing the laundry, where someone up in the kitchen didn't realize you were there and they shut the light off? What do you do? That's Alzheimer's, at times. The light is on, the light is off. The light is on, the light is off.

Greg O'Brien:
The reality is, at some point there isn't going to be someone up in the kitchen to turn the light back on. And that's why you need to get help early, because there's strength in numbers.

Dr. Correa:
Thank you, Greg, for standing behind us, many of us. Helping us feel more supported and more comfortable and understanding better what it is to live with Alzheimer's. Thank you for opening your heart and sharing your soul and your family's story with us, and all of our listeners in the Brain & Life podcast.

Dr. Correa:
Can't get enough of the Brain and Life Podcast? Keep the conversation going on social media when you follow @brainandlifemag, or visit brainandlife.org. As your hosts, we would also like to hear from you on Twitter, @neurodrcorrea, and @AudreyNathMDPhD.

Dr. Correa:
Welcome back to the Brain and Life Podcast. Thank you again to Greg O'Brien for opening up his embedded perspective of living with Alzheimer's and his family's experience with the condition. Now, we're rounding out this New Yorker's episode, basically, with Dr. James Noble. He's an Associate Professor of Neurology and a researcher in Alzheimer's disease at Columbia University Medical Center. He also has a longstanding dedication to helping the community face. The challenges brought about by Alzheimer's disease and other dementias and especially improving health resources for under-resourced communities. Most recently, he authored and worked with the AAN to release a book on Navigating Life With Dementia, that provides straightforward and no-nonsense advice for everyone about dementia. Thank you, Dr. Noble, for joining us here on the podcast.

Dr. Noble:
Thanks for having me, Daniel.

Dr. Correa:
So help us take a step back and learn a little bit more, like help us understand the panoply of terms that come out there for us about memory changes and cognition. What's the difference between dementia, mild cognitive impairment, senility? What is normal aging? Can you help us understand those different terms?

Dr. Noble:
That's a great question, and one of the most common ones that I get in the office. And really, how I start in framing the book, and that is trying to level with people to make sure that we're all literally on the same page, right? So we have a clear sense on both ends of the spectrum, and how people are doing really well, and how people aren't doing really well. So, on the one hand, we can say that people who are having really profound changes in thinking and memories, such that the impact their everyday activities to the point that they need help from loved ones and maybe professional caregivers, we say that that's dementia. Whenever there's a substantial degree of cognitive impairment or behavioral changes, or maybe even psychiatric symptoms that lead to those needs becoming evident and needing support. That's on the one hand.

Dr. Noble:
On the other hand, is the process of normal cognitive aging, whereby people are doing really well. Maybe having no concerns for memory or thinking whatsoever, and have no demonstrable changes when we send them through more comprehensive neuropsychological or memory-based testing. And then there's this really complicated middle ground, where so many people as they age are feeling something just isn't quite right. And sometimes that is getting towards that direction of dementia. Maybe they're having evidence that we can see on examination, that they can feel that there's been a change, but they haven't had to change the way they lead their day-to-day life. And we would call that mild cognitive impairment. That's a middle ground, where they haven't had to really rely on others yet, but there's some meaningful, demonstrable change in memory.

Dr. Noble:
And the thing that we've become very interested in is that middle ground between normal and MCI. What is typical? What is normal? These are all terms we've tried to grapple with. And the way that we've determined what seems to be normal or typical is by assessing many, many people from many walks of life, across many different places in the country. And we can say with a high degree of confidence that somebody who's of this age, with this as their primary language, with this as their educational background, the changes that they have on testing are more likely than not to be meaningful and worth monitoring.

Dr. Noble:
And so these are all very complicated, interrelated, and problems that occur on a continuum. And that we do think that these are not just part of getting old. These cognitive changes when we identify them, they're not just so-called senility or getting old, they seem to be something that's meaningfully different. And we know this. You think about extreme cases of people who are having severe problems with thinking and memory. We also know that there are extreme cases of people who live to quite old ages, over 115 years old and still can fare very well cognitively. So we know that the process of normal cognitive aging can endure well beyond 100 years, even though it's rare.

Dr. Correa:
And then you mentioned senility. So senility, is that a different term? What's the difference between that and these other dementia terms?

Dr. Noble:
Yeah, it's an older term. So the way that we used to define dementia was basically, pre-senile or senile dementia. And the reason for that was, if you go back to the earliest case records of Dr. Alzheimer himself, he first met a woman who was 51 years old, who later died in her late 50s. And he classified her clinically, he even took her photo. He even drew the changes, microscopically that he saw in her brain after she died. And that was considered to be pre-senile dementia. That was, she was of an age where we wouldn't really expect there to be memory problems. And at the time Alzheimer's really coming up with this construct, it was relatively infrequent for people to age into their 70s, and 80s, and 90s. And many times when people did, they had some sort of problem. And it was just considered to be, well, that's just the way it is when people get old enough.

Dr. Noble:
As people have aged in a healthy way in the more modern times, we've realized it shouldn't be the case that actually everybody who becomes of a certain age develops dementia. As I said, we have many cases of people who have serious problems early on, and many people who age very well after 100.

Dr. Correa:
And then we both brought up memory, but also the term cognition. So can you have dementia without having a problem with your memory?

Dr. Noble:
Absolutely. Prototypically, we think of Alzheimer's disease as being this problem of severe forgetting. And the truth is that most of the time, that is the case. Most people who end up having Alzheimer's disease have a forgetting problem. But I think it's worth getting back to those terms we started off with, right? So we talked about normal cognitive aging, mild cognitive impairment, these middle grounds between the two. And there's even maybe a term we're starting to use called subjective cognitive impairment or subjective cognitive decline. And then at the other end of that spectrum is dementia. That gets to the description of how people are aging, but it doesn't really get to the why.

Dr. Noble:
And we're moving into an era where we're starting to get to the biological processes of these aging processes. And we're realizing that Alzheimer's disease, as we've classically defined it, is the most common reason that people will develop dementia over time. And the most common form of Alzheimer's disease that we see is a severe forgetting problem. But we've also come to realize that there are non-forgetting, or non-amnestic forms of Alzheimer's disease, where people may first present with problems with finding words that they want to say. Or they're getting lost very often, or they're having trouble juggling two different ideas at once. These are some other forms that we've seen.

Dr. Noble:
And they also don't start to describe the other non-Alzheimer's forms of dementia, where we start to see maybe language problems in a different way, or maybe even behavioral or personality changes. And we start to think about things very differently in those individuals. And again, this aspect of shifting from just a clinical description to a biological description, we can't really determine that based on asking people questions or doing tests, just pencil and paper examinations. We have to dig deep into trying to understand it through things like brain scans, sometimes blood tests, and even spinal fluid analyses.

Dr. Correa:
So really let's think about that person who notices a change in their memory or their cognition in themself, or maybe a family member. What would you suggest be their first steps?

Dr. Noble:
I would say it's probably, you know, we're thinking about a nationwide audience here. You and I are spoiled by the riches of having many, many neurologists in New York City, but most people don't have access to a neurologist straight out. Or it may be that there's some time before an appointment can be made. But in many cases, it starts with a visit to the primary care physician. You and I both know that there are many reasons for why people become forgetful, and some of them are actually treatable and reversible, even though it's uncommon. That's the main thing that we have in our office is to make sure that we haven't missed something that's potentially treatable and reversible, and maybe even time dependent, right?

Dr. Noble:
So those include things like vitamin deficiencies, thyroid problems, and in rare cases, things like tumors that are becoming evident. You don't want to wait six or nine months before you see a specialist to make those diagnoses, especially if something needs to be done quickly. So first and foremost, I would say to bring this up with either your doctor or your loved one's doctor. And to your point about whether or not somebody recognizes these changes, we know that about half of all people who have things like Alzheimer's disease, don't see it in themselves. It really relies upon a caregiver recognizing something or a doctor asking a loved one, do you see this in your loved one? And we need people bringing these things to the attention of their doctors so they can start sorting things out and seeing if a specialist referral is necessary.

Dr. Correa:
So it's bringing it up, it's the primary care. And then when it's necessary, getting that referral. But going ahead and starting out with some tests like labs and maybe a picture of the brain to make sure something else isn't going on and taking actions early.

Dr. Correa:
Now, when we were talking with Greg, he shared with us that his mother, his father, his maternal grandfather, and his maternal uncle all had variants of Alzheimer's disease. So he knew early in his symptoms, what he was potentially dealing with. Are all dementias familial or genetic?

Dr. Noble:
They're not, but it's also a complex answer that we're going to get into. All right. So there are probably just a few hundred families that we know of now, maybe even worldwide that have one of several different genes that have changed. They have an early onset form of Alzheimer's disease that seems to run consistently in a family, such that just about half of all the members in any generation get the disease by a relatively early age. And we define early or young onset dementia as being, really before age 60. But in truth, we see many families who have it down in their 40s, sometimes 50s as well. And again, the concern we have for these very specific genetic changes are when we see a family where, if there are five children, three of them have it in a certain generation by a certain age, that kind of thing. Generation after generation. But it can also happen out of the blue, without that family history.

Dr. Noble:
But whenever we see that family history, we start thinking about doing genetic testing to understand, is that the root cause for these changes? But for everybody else who has one or more family members who have memory loss that begins after age 60, while there can be rare cases, and we're starting to understand that there may be more genes than just those three, it is often the case that we see that there's some genetic changes in the human code, the human gene code, but they don't necessarily tell us clearly whether or not that is the cause of somebody's dementia. We now know that there are somewhere in the neighborhood of five dozen different genes that make somebody more or less likely to have thinking or memory problems. Then the effects of these genes can be very small or they can be relatively large.

Dr. Noble:
Sometimes we see these in combination, and we're still trying to wrap our head around, what does it mean when somebody has one or two or three of these genes? What's the net effect? We just don't know. And because of that, and because we don't have necessarily any changes in medications or prevention strategies that we would suggest as a result, we don't even suggest getting testing done for these, because it may only introduce some unnecessary, worry about something we cannot do. Now, maybe that'll change over time as we start learning more about the disease. And maybe there'll come a time where we want to know about a genetic profile.

Dr. Noble:
But aside from getting genetic testing, what we also know is that age itself is the single biggest risk factor for developing things like dementia, as we age. And sometimes we also see that families who actually age very well ... so people who are getting into their 80s and 90s and even 100s, they're becoming more likely to develop something like dementia. So when somebody comes to me and says, well, I'm really concerned because my aunt, my uncle, my dad, my grandfather developed dementia, but they were all 100 when they got it. To us, we would say, well, maybe that's not a substantial genetic concern, but just a really a great marker of longevity in your family.

Dr. Noble:
The the other piece I would say is that the way we deliver care now is so different than how we did it even 10, 20 years ago, that some of the risk factors that we couldn't control back in the 70s and 80s are very well controlled and may not necessarily confer the same risk over time.

Dr. Correa:
So then let's go past the genes which we were born with and have no further control of. But what are some of the things that we can all do to help support our brain's cognition and memory functions?

Dr. Noble:
Yeah, absolutely. So there are four things that I think most physicians, and especially neurologists will recommend. And that is keep yourself physically active, keep yourself on a healthy diet. And there was even a study just came out recently, suggesting that actually both of those things matter. And just doing one or the other may not be as helpful as doing both together. There are different ways to approach diet. There are different ways to approach exercise, and I never want to tell somebody they have to go out and start running marathons tomorrow, because I'll lose my patients if I tell people that, right? Instead, I say do more than what you're doing right now. Use step counters that are on smartphones to tell you how active you are and set yourself a new reasonable goal. There are no absolute numbers other than just saying, do more than you've done right now.

Dr. Noble:
The other components are more around ... not so much around aspects of body, but really around mind. And that is keeping yourself socially engaged with friends and family, and also cognitively stimulated. There are many studies, fairly consistently showing that people who do that across their lifespan seem to have some sort of protection against getting dementia. Now, whether or not it's those activities or something else that they do or everything altogether, we don't really know, but there's very little downside to suggesting these things. And it may have other benefits for cardiovascular outcomes, aside from just brain related outcomes.

Dr. Noble:
But it's also the case that we know that those kind of things don't seem to be as helpful once somebody develops thinking and memory problems. So the earlier somebody starts, it seems like it's probably better. Now, it's not to say those things are necessarily bad for people. And there's probably a lot of innate good in being physically active just for the physical therapy components of it. But it seems like the impact of those kind of changes definitely lessen over time, especially once somebody has an established diagnosis.

Dr. Correa:
Wow. That's an excellent direction for all of us to hope and move forward towards. We look forward to the book, Navigating Life with Dementia. So you can find this from Brain & Life Books and online and available already. And it features excellent chapters to address some of the issues that we've talked about with Greg O'Brien, like treatment of behavioral and psychologic symptoms. And then touches on some topics that don't often really get discussed, like maintaining a person's independence and their safety.

Dr. Correa:
And in a future episode, we'll be talking more about advanced care planning. And this is also very significantly covered in the book, so a really excellent resource. Thank you, Dr. Noble for joining us here today.

Dr. Noble:
Thank you so much for having me, Daniel. Wonderful conversation.

Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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