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Alzheimer’s Podcast – Episode 1, Transcript

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[00:00:00] Dr. Dan Gibbs: The very first time that we communicated to friends that I had Alzheimer’s was quite early on.

[00:00:06] Micaela Arneson: Alzheimer’s disease affects about 6 million Americans and counting.

[00:00:10] Dr. Dan Gibbs: When we finished dinner, I passed Lois the check to figure out the tip in dividing it up, and I explained I can’t do this anymore because I have Alzheimer’s disease.

[00:00:20] Micaela Arneson: It’s a well known disease, but there are a lot of misconceptions about it.

[00:00:24] Dr. Dan Gibbs: They were totally taken back because they had no idea and they didn’t believe me. They thought I was joking. And because I was still able to converse pretty well.

[00:00:33] Micaela Arneson: So in this first episode of the Alzheimer’s disease podcast, we’re gonna start with the basics.

[00:00:39] Dr. Andrew Budson: Alzheimer’s disease damages and ultimately destroys brain cells. Alzheimer’s disease itself is not able to be stopped. What we can do are things to slow down the progression from a clinical functional standpoint.

[00:00:58] Micaela Arneson: And we’ll clarify why Alzheimer’s and dementia are not the same thing.

[00:01:03] Dr. Dan Gibbs: The dementia of Alzheimer’s disease is just the tip of the iceberg.

[00:01:07] Micaela Arneson: We’ll hear from experts, carers, and most importantly people living with Alzheimer’s.

[00:01:13] Sarah Hornback: None of us are given a perfect journey, and this is just part of our journey and we’re gonna make the best of it.

[00:01:21] Micaela Arneson: And at the end of the show, we’ll also share resources where you can learn more about this complex disease. I’m your host Micaela Arneson. Thanks for joining us.

[00:01:31] The Alzheimer’s disease podcast was created for educational purposes only. It’s not a substitute for formal medical advice, diagnosis, or treatment. So if you have questions about a medical condition, talk to your qualified healthcare provider.

[00:01:45] Dr. Philip Sloane: First thing I wanna do is talk about dementia and Alzheimer’s disease and the terms and how they relate to each.

[00:01:50] Micaela Arneson: This is Dr. Phillip Sloane, a professor at the University of North Carolina at Chapel Hill.

[00:01:56] Dr. Philip Sloane: I have a lot of clinical background as well as having done research in care of persons with Alzheimer’s disease and other cognitive problems.

[00:02:03] Micaela Arneson: For a long time, the terms dementia and Alzheimer’s were used interchangeably. In fact, they still get confused for each other today. So let this be the first takeaway dementia and Alzheimer’s are not the same.

[00:02:17] Dr. Philip Sloane: Dementia is a word that really describes loss of mental or cognitive function over time.

[00:02:24] Micaela Arneson: In other words, dementia isn’t a disease. It just means that someone’s thinking and memory has deteriorated to the point where it impacts their day to day activities. Dementia is caused by diseases, including Alzheimer’s disease. And in fact, Alzheimer’s is the most common cause, responsible for between 60 and 80% of dementia cases in the US.

[00:02:44] Dr. Philip Sloane: There are other kinds of dementias as well. So in addition to Alzheimer’s disease, there’s vascular dementia, there’s frontal temporal dementia, there’s Lewy body dementia. Those are the kind of four main types of dementia.

[00:02:56] Micaela Arneson: And they can look similar, especially in later stages, like difficulty talking, remembering, or eating. But the way they impact the brain is different and the treatments may be different too. It’s also possible to have more than one type at once.

[00:03:10] Dr. Dan Gibbs: About 50% of people with Alzheimer’s disease also have vascular dementia and vice versa, because the risk factors are the same most likely. My name is Dan Gibbs. I’m a retired neurologist and oddly enough, I have Alzheimer’s disease.

[00:03:24] Micaela Arneson: Dr. Gibbs practiced for 25 years. So he’s a great person to talk to about how our understanding of Alzheimer’s has changed, and it’s changed a lot.

[00:03:33] Dr. Dan Gibbs: All through my career I saw a fair number of people with dementia, including those with Alzheimer’s disease. And especially in the late 1980s and early 1990s, Alzheimer’s disease was about the least favorite thing I dealt with. And that was bad on me. The reason for that was at that time we had absolutely nothing to offer to people with Alzheimer’s disease.

[00:03:54] Micaela Arneson: Historically, an Alzheimer’s diagnosis was met with a lot of fear and for good reason.[00:04:00]

[00:04:00] Dr. Dan Gibbs: There were no drugs. And by the time I was seeing them for the first time, they were usually in the advanced portions of the disease and there really wasn’t even any hope to offer them. So it was truly a crummy disease for them and for me.

[00:04:14] Micaela Arneson: But in the last decade or so, we’ve had a couple huge revelations. First:

[00:04:19] Dr. Dan Gibbs: Alzheimer’s disease is much more than dementia. The pathology in the brain…

[00:04:25] Micaela Arneson: Or the changes in the brain.

[00:04:26] Dr. Dan Gibbs: …start to occur in the brain up to 20 years before there’s any cognitive impairment. What we’ve thought of as Alzheimer’s dementia is really just a very small part of the continuum of Alzheimer’s disease that goes back 10 or 20 years before there are any symptoms at all.

[00:04:44] Micaela Arneson: And this has huge implications for treatment.

[00:04:47] Dr. Dan Gibbs: There are ways of slowing the progression of Alzheimer’s, particularly if started very early in the disease. By the time you get to the stage of Alzheimer’s dementia, the horses are already outta the barn and it may be too late to do much about the disease, at least with what we have to work with today. There already is a huge amount of data that lifestyle modifications are effective if started early.

[00:05:11] Micaela Arneson: We’ll talk more about these lifestyle changes and other therapies in coming episodes, but for now, take away number two is that Alzheimer’s disease can now be diagnosed much earlier than at the dementia stage. And for some people it could be managed well.

[00:05:25] Dr. Dan Gibbs: I’m really trying to help shift the conversation in this direction is to learn how we can slow the progression of Alzheimer’s pathology in the brain. And therefore slow the onset of Alzheimer’s symptoms and push Alzheimer’s dementia totally off the map so that we age in a healthy way. And then we die naturally of something else, not Alzheimer’s.

[00:05:49] Micaela Arneson: So how exactly does Alzheimer’s disease affect the brain? Here’s Dr. Jason Karlawish, Director of the Penn Memory Center.

[00:05:58] Dr. Jason Karlawish: If a neuropathologist slices up the brain of someone who died with dementia, likely caused by Alzheimer’s, what you’ll see is plaques of amyloid and tangles of tau protein, and also missing neurons just not there the way they should be.

[00:06:12] Micaela Arneson: Okay. So let’s break this down, starting with neurons. Neurons are cells that look like tiny trees, and they’re about 86 billion of them in the brain. They form a network that carries information throughout our entire body. So they’re involved in literally everything we think, do, and feel. In Alzheimer’s disease, neurons are destroyed by amyloid and tau.

[00:06:33] Dr. Jason Karlawish: Amyloid is a protein that is present throughout the body in various different forms. Amyloid just describes the shape of the protein. In persons with Alzheimer’s disease, amyloid gathers together into these plaques and have some role in causing neurons to die. Tau is a protein that’s found inside neurons. Normally it functions to move transmitters along.

[00:06:55] Micaela Arneson: Neurotransmitters are little messengers that carry signals from neurons to other cells.

[00:07:00] Dr. Jason Karlawish: But in Alzheimer’s disease, the tau protein turns into a tangle of useless protein, if you will.

[00:07:06] Micaela Arneson: So the messages don’t get through.

[00:07:08] Dr. Jason Karlawish: Together, amyloid and tau have a role in causing neurons to die slowly over time, and therefore people to slowly lose brain functions.

[00:07:16] Micaela Arneson: For a lot of people, the early signs of this damage are memory loss and trouble learning new things.

[00:07:22] Dr. Dan Gibbs: They were the sort of memory issues that you could easily dismiss as just being normal for getting older. I had moved to a new office and I never could learn the telephone number in my office. By 2012, I was having little trouble with remembering names of colleagues.

[00:07:38] Micaela Arneson: This is because Alzheimer’s disease tends to attack the hippocampus first, which is a part of the brain that’s responsible for remembering events and facts. But another important revelation we’ve had about Alzheimer’s disease is that it affects people differently.

[00:07:52] Dr. Jason Karlawish: There are three other forms of the disease. The disease can start in the part of the brain where visual images are organized.

[00:07:59] Micaela Arneson: That’s [00:08:00] at the back of your brain.

[00:08:01] Dr. Jason Karlawish: And that’s called posterior cortical atrophy or visual variant Alzheimer’s. And those patients, earliest symptoms will be troubles with spatial arrangements. They’re complaining constantly that their glasses are no good, they need new eyeglasses despite multiple new prescriptions. Another presentation of the disease is the person knows what the thing is, but they just have a difficult time naming asparagus um, so they’ll call it, you know, the thingy, the green vegetable, you know what I’m talking. And then a final presentation with the earliest problems are with organization and planning and multitasking.

[00:08:32] Micaela Arneson: In fact, in retrospect, Dr. Gibb’s very first symptom years before he started forgetting things actually had to do with smell.

[00:08:40] Dr. Dan Gibbs: My first symptom of Alzheimer’s disease was probably back in 2006 when I first noticed that I was having a decrease in my ability to smell. Then about a year later, I started to have these weird, almost olfactory hallucinations called phantosmias where just out of the blue I would get the same stereotypical smell that was like baking bread mixed with perfume. It was very pleasant.

[00:09:04] Micaela Arneson: Take away number three, no two people with Alzheimer’s are alike and their disease progression won’t look the same either. So let’s talk about who gets Alzheimer’s. You probably already know that for the most part, the disease is diagnosed in older people.

[00:09:21] Dr. Jason Karlawish: The older you are, the more likely you are to develop Alzheimer’s disease. That oftentimes is called late onset Alzheimer’s disease.

[00:09:29] Micaela Arneson: Now, old is relative, but in the medical community, late onset usually describes someone who’s around 60 or 65 or older when they’re diagnosed. Age is one of the biggest risk factors, but 5 to 6% of people start experiencing symptoms when they’re younger. People like Paul.

[00:09:47] Paul Hornback: My name is Paul Hornback and I’ve been living with early onset Alzheimer’s disease for really over 10 years now.

[00:09:57] Micaela Arneson: Paul was just 55 when he was diagnosed. He has a family history of the disease, which is another main risk factor.

[00:10:04] Paul Hornback: My father had Alzheimer’s, but he also had a lot of other health conditions and he died when he was 80 years old. But also on my father’s side, my grandmother died from Alzheimer’s and then I have two uncles on my dad’s side that also had Alzheimer’s.

[00:10:23] Micaela Arneson: There is a genetic component to the disease. But if you have a family history, neurologist Dr. Andrew Budson doesn’t want you to panic.

[00:10:31] Dr. Andrew Budson: It’s not like one’s definitely gonna get it if you have a family history. It increases your chances of developing the disease between twofold and fourfold. What that means is that if the risk of developing Alzheimer’s disease at age 65 without a family history is about 3%, with a family history, that’s between 6 and 12%. But that still means you have an 88% chance at that age of not developing the disease.

[00:11:03] Micaela Arneson: Dr. Gibbs learned he had a family history by chance. After he got a DNA test for a genealogy project his wife was working on, the test revealed he had two copies of a gene called APOE4.

[00:11:14] Dr. Dan Gibbs: I was totally flabbergasted and shocked because Alzheimer’s disease wasn’t on my radar screen. Both my parents had died of cancer early on. APOE4 is quite common. Many people have an APOE4 gene, or at least one of them, and will never get Alzheimer’s disease. But if you have two copies, the risk goes way up. It is not a determinant.

[00:11:35] Micaela Arneson: There are a couple other genes, or genetic mutations, that almost certainly lead to Alzheimer’s, but these are incredibly rare, like less than 1% of Alzheimer’s cases.

[00:11:45] Dr. Dan Gibbs: I would not suggest getting tested genetically, unless you’re interested in being part of a study, unless you have a family history. And if you do get tested, I would recommend doing it under the supervision, if you will, of someone who can explain the [00:12:00] test to you and what your risk. Because a lot of people just freak out when they get their results back.

[00:12:06] Micaela Arneson: Dr. Budson says, interestingly, gender is another risk factor, although we’re not quite sure why.

[00:12:12] Dr. Andrew Budson: It turns out that women are about twice as likely to develop Alzheimer’s disease as men. There’s a lot of different theories that have been proposed. It seems to clearly not simply be that women live longer, it’s more complicated than that. And I would say we’re just at the beginning of engaging in research to try to understand this.

[00:12:40] Micaela Arneson: Research also shows that in the US, older African Americans and older Latinos are at a higher risk of developing Alzheimer’s than older white Americans. But again, the picture is more complicated than the numbers suggest. Dr. Karlawish explains.

[00:12:54] Dr. Jason Karlawish: I think when we talk about race, we have to recognize, especially in America, race is surrounded by a host of other things that are captured under the label of race. If you grew up in regions of the United States where schools were segregated and also the quality of the education of those schools was itself inequitable, you are going to have a lifetime set of different exposures that increase your risk of developing late life diseases like Alzheimer’s. And we think some of that has to do with cognitive reserve that’s developed early in life. So you can paint a story that the risk, if you will, associated with race is a story of race and its association of access from childhood on to equal opportunities and socioeconomic stability. Having said that there is a story that surrounds some of the biologic aspects that cluster with race, namely genetics, and that’s a story still being figured out and told.

[00:13:43] Micaela Arneson: Finally, head injuries and heart disease are also risk factors, along with depression, chronic loneliness, and a sedentary lifestyle, to varying degrees. All of the people we spoke to for this episode have written books about Alzheimer’s disease and their experiences researching it or living it. You can find a list of those titles on our website, healthunmuted.com, along with links to other resources with more information about Alzheimer’s disease and dementia, like the Alzheimer’s Association, National Institutes of Health and Mayo Clinic.

[00:14:17] In the next episode, we’ll talk about how Alzheimer’s disease is diagnosed.

[00:14:21] Paul Hornback: I knew as I was taking the test that there was something wrong, definitely wrong.

[00:14:27] Dr. Jason Karlawish: The most exciting recent developments are the ability to measure those biomarkers in blood.

[00:14:32] Micaela Arneson: We’ll talk more about symptoms and hear from people and their loved ones about how they coped with the shock of diagnosis.

[00:14:39] Sarah Hornback: I was devastated. I couldn’t believe it. I didn’t want to believe it.

[00:14:43] Anthony Copeland Parker: No one’s gonna give you a regime that they can say that it’s gonna be perfect for every situation.

[00:14:50] Micaela Arneson: This is the Alzheimer’s disease podcast. This show is part of the Health Unmuted audio library by Mission Based Media. To listen and learn more, visit healthunmuted.com and follow our show on your favorite podcast player. The Alzheimer’s disease podcast is written, hosted and produced by me, Micaela Arneson. Sound design is by Ivan Juric. Our executive producer is Dan Kendall and Chris Hemmings is our associate editor. Many thanks to Dr. Daniel Gibbs and Paul Hornback for sharing their personal experiences, and to Dr. Gibbs, Dr. Phillips Sloane, Dr. Jason Karlawish and Dr. Andrew Budson for sharing their medical expertise.

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