Impact & Insight 13: Katherine Lambert, Territory Vice President, Alzheimer's Association

Katherine Lambert has spent more than a decade on the front lines of the Alzheimer's crisis.

As Regional Vice President for the Alzheimer's Association, Katherine oversees chapters across South Carolina, Georgia, and North Carolina, connecting families, mobilizing communities and leading with a singular mission.

June is Alzheimer's and Brain Awareness  Month and we are pleased to have Katherine join Managing Director Jane Howze for a conversation about where the Alzheimer's fight stands and the breakthroughs, barriers, and why the caregiver can never be the forgotten patient.

Find more at www.thealexandergroup.com

Transcript

SPEAKER_00 0:06

Anything we're doing to stretch our brain and and do that differently, you know, it doesn't have to be as robust as say learning a new language, but trying new things and stretching our brains in ways every day, that actually helps uh has a protective quality to it as well.

SPEAKER_01 0:33

Welcome to Impact and Insight. June is Alzheimer's Awareness Month, and I am so thrilled to have an Alexander Group alumni who is now an executive with the Alzheimer's Association visiting with us to educate us and perhaps give us a little hope on a disease that affects one-third of adults over 85 and one out of nine adults over 65. Catherine Lambert has been an executive with the Alzheimer's Association for more than a decade, and we are just honored to have her here. Welcome, Catherine.

SPEAKER_00 1:16

Thank you, Jane.

SPEAKER_01 1:17

I was so excited to get the invitation to join you. Excellent. Catherine, what drew you to the Alzheimer's Association?

SPEAKER_00 1:25

You know, most of uh my nonprofit career have been with youth and children, and a lot of my volunteer work up until this. And my parents were aging, and so I was starting to dip my toes in the uh world of older adults. And my dad uh had recently been diagnosed with mild cognitive impairment. And so I had come to know a little bit about the Alzheimer's Association. So when this role uh became available, it seemed like a very natural fit. And now over the last 12 years, so many families we've walked this journey with, so much progress that it keeps me intrigued and engaged every single day.

SPEAKER_01 2:04

Well, uh Catherine, when you started, was there even a test or any way to determine if you truly had Alzheimer's?

SPEAKER_00 2:15

No, it's amazing, really, if you think about what's happened in the last decade in this space. You know, really the accurate diagnosis was through autopsy at that point. And um that's not ideal for diagnostics for sure. Uh I mentioned my dad with his mild cognitive impairment. We were diagnosing off symptoms. Um, now we're at a place that the underlying biology, um, my father's turned out not to be due to Alzheimer's. The underlying biology matters now because of treatment. So right around that time, you could do a cerebral spinal fluid or a lumbar puncture for diagnostics, but not many of us want to voluntarily sign up for that either. Um, and since then we've moved to pet imaging, which is non-invasive but very expensive and not widely accessible. Um, and in the last year and a half, we have FDA-approved blood tests. So we've come a long way in the diagnostic space.

SPEAKER_01 3:17

You know, it's so interesting because there's so many diseases that in 10 years you will we really haven't done had much success. And Alzheimer's one of the drugs, one of the diseases that there is progress, right?

SPEAKER_00 3:36

There's been a lot of progress, and I think it's directly relational to the investment in research funding. Um, you know, about a little over a decade ago, the um NIH, National Institutes of Health, uh, the investment from Congress was about $500 million. And independent researchers said, we need to get that annual investment north of $2 billion to really attract the brightest minds, to really drive the breakthroughs. And now that investment is edging up on almost $4 billion a year going to that research. So you see the investment in research, and then you also see these big changes coming. So it is an exciting time and um it's so needed. I mean, that the prevalence of this disease um is becoming more and more.

SPEAKER_01 4:23

Well, it was I correct. I had done some research before we talked, and is it were my figures correct that one out of nine adults over that's as somebody who just is turning 75? I mean, that's um daunting. That's like really that's the same number as women with breast cancer, men who get prostate cancer.

SPEAKER_00 4:50

I mean, that's correct. And and I think the piece too, and and some of this is I do think because we have better diagnostics. Um, and so, you know, I I think back 20 years ago, people could be diagnosed by grandchildren, you know, who would say, Why doesn't my grandparent remember, know my name? Why don't they know who I am? And now we're really talking about in the same way if you know you found a suspicious spot on your arm, you wouldn't say, Well, I'll wait a couple of years and see if that gets better. No, you'd go to the dermatologist and have it checked because you know that early detection and accurate diagnosis makes a huge difference in what your options are. We're now at that place with our brain health and with dementia and other forms of dementia and Alzheimer's, that we know that if we go early, there are now options. And so we're starting to actually see. I was um in DC last week for our advocacy forum, and on the stage, there were a number of people in their 50s who have been diagnosed. Um, previously, that would have been talked up potentially as stress or menopause or any number of other things, and now we're starting to say, hey, this is impacting people in this demographic, and we need to we need to be looking and doing all the work to accurately diagnose.

SPEAKER_01 6:06

Well, what is the difference between women diagnosed and men? Isn't it predominant more women than men?

SPEAKER_00 6:15

Women are disproportionately impacted by this disease. Um, and there's a whole body of research into why. Um, I don't know that there is a definitive answer to that yet. Um, but women are disproportionately impacted, both with a diagnosis, but also on the caregiving side of things, too. There are more female caregivers in that mix as well. The African American population is also disproportionately impacted at two times, and the Hispanic Latino at one and a half times the rate of um Caucasian white older adults.

SPEAKER_01 6:51

That is so interesting. And I was um at the Milk and Global conference last month, and there was a session on longevity and on women's health, and they were talking about research that that um possibly the effects of menopause might have some effect. Is that something that is being researched?

SPEAKER_00 7:14

It is. There's a tremendous amount of research into menopause, into female hormones, and and is it what parts of that is is impacting there. Are studies around stress and stressors that are different for women than men. So it will be very interesting to see that body of work continue to report out and develop. But you know, you talked about there's a huge interest right now in brain health and risk reduction. And we are at a place that it's wonderful that we have treatment and we have much better diagnostics today. We're still not where we would want to be, is say in the same space as cancer, where there are a multitude of treatment options. But we also know last summer, uh U.S. Pointer, which was a um multi-domain lifestyle intervention clinical trial. Um, actually, one of the five sites in the United States was in the Greater Houston area. The one of the other five was in my backyard in North Carolina. Um, but they they did this study where uh one group led a very structured intervention around um diet, exercise, social, and cognitive stimulation. And the other had information, but it was a self-guided approach. How did how much did they want to do? Where did they want to focus? And at the end of this two-year clinical trial, both groups had a lift in cognitive function, which is exciting. Uh, but the structured group, their brains were chronologically almost two years younger than that of their counterparts in uh the self-guided group. So I don't know about you, the older I get, one or two years, that wouldn't have sounded exciting in my 30s, but in my 50s, I'd love to go back a few years and be as sharp as I was then. So the whole point of this study is talking about what we can be doing in our 30s and 40s to lower our risk and improve our brain health.

SPEAKER_01 9:07

Well, and the it's so interesting. You're you're uh focus mentioning this because one of the things that was talked about is for brain health is sleep.

SPEAKER_00 9:21

Tremendous studies on sleep and the benefit of sleep. And in fact, with US Pointer, there are some ancillary studies, one of which is around sleep, one is around the gut biome, but they are about to report out this summer with their findings. But yes, there is a tremendous link between sleep and and cognitive function.

SPEAKER_01 9:40

Well, in following up on that, what um one of my uh colleagues here said, would you please ask her if I never can find my car keys? Is that more something I should be worried about? And I said, Well, that started with me at 18 years old, but I will ask Catherine that question.

SPEAKER_00 10:04

It's a great question. And uh anytime I go speak, like to my mom's friends, they have similar questions. I did this, should I be worried? Um, you know, there is a difference between a cognitive impairment and forgetfulness or being overwhelmed. Um and so what I would say is if these things are big disruptions in day-to-day life, um, most of us can backtrack to if we stop and say, okay, what was I doing after I parked my car? And you can, it may take you a few minutes, but you can, I lose my fun all the time. You can backtrack to where you remember having it and find it. That's distraction overwhelmed with other things. It's the inability to do that, or take someone who's a phenomenal cook. No one's going to be worried about me in this category, but someone who's a phenomenal cook and they've always made bread and they can't do it, or they serve it at the at the dinner table and it's salty, or too much sugar. Like those are things that someone, my father, one of my first signs was he was a he was my math and science parent, and he struggled figuring out a tip on a restaurant bill. Um, and it it just struck me odd that, huh, that that's unusual. So things that are unusual for that person are things that you might want to have a conversation with a medical professional about.

SPEAKER_01 11:29

Well, and you know, there's always 10 years ago, people would say, Well, if I have Alzheimer's, I don't want to know because there's no treatment, and I just live every day in dread. But now that's not the case, right?

SPEAKER_00 11:46

That's right. And and I would say uh you're exactly right. And I think there are still people who feel that way, that way today, and it's a personal choice. But yes, there is uh FDA-approved treatment that there are lots of FDA-approved treatments, but up until recently, they have been treatments to deal with the symptoms. So maybe less agitation or more focus. Um, the drug that most people will know as Lekimbi, it's an infusion drug, um, that is a drug that actually works with the underlying biology specific to Alzheimer's, and it slows the progression of the disease. So imagine having however long of more independence, um, that to me is a game-changing result. And so there are that particular drug is actually back in clinical trials with individuals who uh show that they have the underlying biology, but they are asymptomatic. And what the trial is trying to show is could we use this drug to have people never have the symptoms who have that underlying biology? That's game-changing in how we might manage this disease potentially one day more like a chronic disease. So think diabetes or something else, where you you have the underlying biology, but you're able to manage it through through a treatment. So more are coming, um, more drugs to report out, but we do have significant change in the last couple of years.

SPEAKER_01 13:18

Well, is Alzheimer's hereditary?

SPEAKER_00 13:22

So there is a um there is a group, it is a small group, very small percentage, like less than 5%, who have a dominantly inherited gene. In fact, uh there's a group out of South America that has been on 60 Minutes previously that they've talked about this, where if your parent has it, you will have it at the same age. They've been a wonderful group to participate in research and see how some of these interventions maybe change that trajectory. Um, but by and large, I mean, we inherit um risk factors from our parents. So there is um, and I am not a science person, so don't worry, I'm not going too deep in this. I'm a liberal arts major, but uh, there's a gene called ApoE4, and you can get a copy of it from one, both, or neither of your parents. That is considered a risk gene for Alzheimer's, and it increases your risk. But lifestyle intervention can be actually a bit, we have more controllable risk factors than most people think.

SPEAKER_01 14:19

Oh, interesting. Interesting. Well, I know that um one of our clients just got diagnosed, and and and he is um a candidate for the infusions, and he talks about it like a rotor rooter kind of cleaning out, possibly brain plaque, and and it's showing promise. And he's optimistic. How is that being used nationwide, or is he you know, narrow study?

SPEAKER_00 14:52

Uh it is being used nationwide, and uh that I've not heard that description, but I like that. That's very true. It's clearing out plaques from the brain uh before they can be clump com clumps and tangles. Um, and it is, in fact, I was just with two people last week in DC who were on this infusion therapy and seeing progress from it. Um, you know, it it has like any treatment. You think about chemo, there are always side effects with that. Um so it is certainly um a conversation, you know, to weigh the risks and challenges. But um it is game-changing in it. Uh, the challenges, however, there are not as many people on it as we would like for a couple of reasons. One, it is only effective in the very earliest stages of the disease. And so that's where it becomes critically important that if you think there's anything wrong with cognition, you start as early as possible exploring that. Because the wait time to get into some neurologists is very long. And by the time folks make it there, they may not be eligible for the treatment. Um, second, you have to be near an infusion center. Um, and up until recently, um, it was cost prohibitive and not covered by insurance. We at the association worked very hard to ensure that um uh Medicare would cover this and then private insurance to follow because we want this to be accessible. Um if we have treatment and it's not available for most, then it's you know it's not ideal. So we have a lot of work still to do in that. Um, I did just hear that for those in the maintenance dose of uh this drug, they are believing they're gonna move to a uh to a pill, to an oral, um, which would change dramatically. Yeah, the time that folks need to, you think about travel time, time to receive an infusion. That that's a good chunk on a regular basis.

SPEAKER_01 16:43

Well, anytime I hear the word infusion, I think expensive. Yes, right? Very true. And I'm sure it's tens of thousands of dollars, and not everybody can afford it, which um leads me to ask you about the lobbying efforts and how the landscape has changed with so much research funding being cut in the last couple of years.

SPEAKER_00 17:12

Well, it's excellent timing. That's what we were in DC. A thousand of our volunteer advocates from all 50 states uh were in DC last week. We've been very fortunate to not have seen as much of that impact in cut research funding. The reality is this is a very expensive disease, and when you look at the vast majority impacted are 65 and older, um, that means Medicare is a big part of funding this disease. And so it is a very salient point that if we invest more on the front end, maybe we'll be investing less long-term on the back end at the government level. Um, the Alzheimer's Association, um, we are the largest nonprofit funder of research. So, in addition to what is being funded by the government, we are uh significantly funding research as well. And we filled some gaps. So, where we were concerned that funding might be cut, like in this dominantly inherited group, we covered for a period of time. So that research didn't stop. Um but what's really exciting is we had a couple senators join to speak and talk about this large push for increased research funding, but that now that we have some of these treatments, we can really focus on legislative change. So, for example, we were advocating and lobbying for this new blood test to be able to be covered by Medicare because it changes the accessibility and cost of this disease from a diagnostic standpoint dramatically.

SPEAKER_01 18:43

Oh, how interesting. And I would imagine that you all are continually focusing on the lobbying because as new drugs come out, new diagnostic tools, you want them to be covered and be able to have the people who need them have access to them, right?

SPEAKER_00 19:04

That's right. If we've invested all the research as a country and organization and no one's able to access and use what comes out, that there's no good that comes from that. So absolutely, we are working to make sure that these are all options and that families have what they need to navigate this disease.

SPEAKER_01 19:23

Well, one question, um, I'm gonna pivot a little way. One question that I was years ago, I covered the Sundance Film Festival, and the audience award was a film called Alive Inside. And they would put earphones on Alzheimer's patients who haven't said a word or done anything, and put their old music on, and they came alive again. I mean, was that a once-off or because we never heard much more about it because the film never was um distributed widely or anything? But I always think about that and thought, well, if there all are Alzheimer's patients, get them earphones, get them, you know, get them music, right?

SPEAKER_00 20:14

The brain is a fascinating place, and music seems to have that um ability to connect with someone. And so um there are a lot of um therapies that that include music therapy and connecting people to music that was meaningful to them in their past. Um, we have seen it with calming agitation. Uh, we have seen, to your point, folks that have been um, you know, nonverbal, non-engaged. Um, I think about the the ballerina who began to to, even in her wheelchair state, not able to make the same um movement she made before, but her arms went out to uh Swan Lake. I it is a fascinating thing to see. And there is actually a lot of research uh into how dance is actually a wonderful for those of us on the brain health standpoint, it's social, it engages your physical activity, but also cognitively thinking about remembering steps and things like that. So there's a huge connection between music and dance, um, both as a therapy but also as a risk reduction option as well.

SPEAKER_01 21:19

Well, and so um I do the spelling V and I play mahjong. Do you think that's a good thing, Catherine? I hope so.

SPEAKER_00 21:27

Absolutely. Anything we're doing to stretch our brain and and do that differently, um, you know, it doesn't have to be as robust as say learning a new language, but trying new things um and and stretching our brains in in ways every day, that actually helps uh has a protective quality to it as well.

SPEAKER_01 21:46

Oh, that's excellent. And um, you know, where are is there any um, I guess cities, universities, research, where is there one place where, you know, I know when I think of cancer, I think of MD Anderson. Where is there one place where you can point to and say, well, this university or research is where some of the most exciting research is being done?

SPEAKER_00 22:15

So there is the wonderful part of this is there is there are so many places that that is is happening. A little pride of North Carolina, Wake Forest University out of Winston-Salem, North Carolina, is where the US Pointers study originated. And they've really been the hub of a lot of the risk reduction and lifestyle intervention. But all across the country in multiple states, we have such promise on so many different fronts. And I think, you know, it's there's never been, we've always talked about hope, but it was kind of hopes and dreams maybe 12 years ago versus, you know, I love hearing people living with the disease today saying what we're discovering today may not change my my path, but I see a real future for my children and my grandchildren. And that matters immensely.

SPEAKER_01 23:06

Excellent. Well for people who have that are listening to the podcast and I think this I think we have 7,000 people executives listen to it. And I know they're thinking well what can I do after listening to this? I have a relative I mean we all have relatives who suffer what can people do? Who should they give money to and how can this how can we all help move this forward?

SPEAKER_00 23:36

So one we have a 24 hour a day seven day a week helpline anywhere in the United States that's 1800 270 to 3900. If you have a question a concern you're on this journey you're worried about someone call licensed clinicians answer that phone 24 hours a day. In terms of companies, you know every employee has a brain we have lots of uh lots of opportunities whether that's a lunch and learn or a webinar we can come in and share some of these informations know the 10 signs should I be worried about my key losing my keys to what can folks be doing around brain health. Companies who want to we have a wonderful brain health wellness assessment that a company can do of how are they supporting their employees along with after the assessment tips and tools that we can help augment. So maybe a human resources department and then we have things like our walks which is where we raise critical funds. We are in over 600 communities across the country so I promise there is a walk in your backyard. And we are able to it's a great way to bring a company together to bond, have that team building but also support um a great cause in the community as well.

SPEAKER_01 24:53

Oh that is excellent and we will post these numbers on the podcast so that people watching will have access to them.

SPEAKER_00 25:01

And so as you sit here a decade later after joining um what gives you hope and what makes you optimistic you know nothing would make me more excited I heard somebody say maybe we'd be at a place that no one at the Alzheimer's Association had a job because we'd solve this disease. I'm not sure that's going to happen in my work lifetime but the fact that we're even talking about that is exciting to me. I think the fact that you know I have a parent who was diagnosed with cancer nine years ago it was not a good diagnosis but we were immediately able to say what are our options what can we do next we were able to put a plan together and you know nine years later my mother is still here that's the kind of change that I think we're seeing in this disease that it's still not a diagnosis you want to receive but there now are options and I think there are even more coming in the coming years that can really change how we proceed with this. And that is such a big difference versus go get your fares in order which is what so many folks who've been diagnosed have heard in the past.

SPEAKER_01 26:13

Excellent what a wonderful note and an optimistic note to end on. And Katrina thank you so much we're so proud you're an Alexander Group alum and the success and the impact you're having on so many people thank you so much for joining us at Impact and Insight today.