Season 2: Episode 9 - Alzheimer’s in the Real World

Andie Cartwright

Welcome to the Better Living Through Data podcast. Anthony, I want to take some time today to talk about Alzheimer's Disease and Related Dementias, especially since June commemorates Alzheimer's & Brain Awareness Month. Let's start with two numbers that do NOT feel small to me: more than 55 million people worldwide are living with Alzheimer’s or another dementia, and two-thirds of Americans having at least one major potential risk factor for dementia.

Anthony Pero

Yeah — 55 million is the part that sticks. That is not some edge-case condition tucked into one specialty clinic. That’s a global population the size of a large country, and when you put it next to “two-thirds of Americans,” you realize brain health is not a niche conversation. It’s aging, it’s care delivery, it’s families, it’s financing... it’s the whole system.

Andie Cartwright

Right. And June being Alzheimer’s & Brain Awareness Month can sometimes make this feel like a campaign color and a hashtag — wear purple, share a story, raise awareness — which matters, by the way. But if you stop there, you miss the human scale. This is about older adults, caregivers, memory concerns, and those awful moments where someone says, “I don’t know if this is normal aging or something more.”

Anthony Pero

And that “normal aging or something more” line is exactly where the high stakes live. Because the science is moving. There are more treatment conversations, more urgency around early detection, more attention to diagnosis. But therapies only matter if the right patients are identified, understood, and reached early enough to actually benefit.

Andie Cartwright

Okay, so let me push on “understood.” Because as a marketer I hear that word and think, sure, segment your audience. But in healthcare, “understood” is heavier than that. You mean: what else is going on with that person? Who’s caring for them? Are they still mobile? Are they isolated? Are they taking six other medications?

Anthony Pero

Exactly. And honestly, this is where people underestimate Alzheimer’s. They picture a diagnosis. They don’t picture the surrounding reality — frailty, cardiovascular disease, mood disorders, long stays in care settings, transitions between sites of care, emergency department visits. In older adults especially, dementia doesn’t arrive alone. It shows up in a crowd.

Andie Cartwright

“It shows up in a crowd” — that’s the line I’m gonna remember. Because it explains why awareness by itself isn’t enough. If the disease is that entangled with everything else, then you need more than a clean clinical label. You need context, and probably a LOT of it.

Anthony Pero

A lot of it, yes. And this is where longitudinal long-term and post-acute care data changes the picture. In controlled trial settings, you often get a cleaner patient story — necessary for science, of course. But older adults in the real world are messier. They have multiple chronic conditions, changing medication regimens, shifting functional status, behavioral symptoms, and frequent care transitions. If you don’t see that complexity, you can overestimate how neatly a therapy will fit into actual care.

Andie Cartwright

Let me sharpen that. When you say “cleaner patient story,” are we basically saying the real 84-year-old in long-term care is not the same as the trial participant on a slide deck?

Anthony Pero

That is EXACTLY the tension. And sometimes it’s uncomfortable. Because a therapy can look promising in a controlled environment, but the real-world question is: what happens when that person also has renal issues, cardiovascular disease, anxiety, sleep disturbance, mobility decline, and a long medication list? Does access happen? Does adherence happen? Do outcomes improve? Or does the system struggle to operationalize the therapy around the person?

Andie Cartwright

And this is where the scale matters, right? Because if you’re only seeing a tiny slice, you can tell yourself a very tidy story.

Anthony Pero

Right. PointClickCare Life Sciences has electronic health record data on more than 15 million patients age 65 and older, with an average of 50-plus data points per patient per day, spanning over 10 years. I want to emphasize the "Fifty-and more points per day" — that’s not one annual snapshot. That’s the rhythm of daily care. And in long-stay populations, the average length of stay is over 800 days, so you’re not just catching a moment; you’re seeing trajectories.

Andie Cartwright

Over 800 days. That’s the number that lands for me. Eight hundred days means you can actually watch change happen — not just diagnosis, but decline, stability, agitation, recovery after a hospitalization, all of it.

Anthony Pero

Exactly. And inside that, there are 3.6 million unique patient records with Alzheimer’s disease and related dementias, plus more than 450,000 active unique ADRD patient records. So now you can study patterns in populations that are old enough, sick enough, and complex enough to reflect the people who really receive care.

Andie Cartwright

Give me the practical version. If I’m listening and I’m not a data person, what are those “50-plus points” actually helping someone do?

Anthony Pero

They can help spot likely therapy candidates earlier. They can help characterize frailty and cognitive patterns. They can track outcomes that matter in the real world — hospitalization, emergency department visits, length of stay, long-term care transitions, medication utilization, provider encounters. And then there’s the texture of daily living: orientation, recall and memory signals, agitation or aggression, wandering, anxiety, self-care evaluations, eating patterns, pain, sleep disturbance, vital signs.

Andie Cartwright

So let me say it back... not perfectly. It’s less “Does this drug work in theory?” and more “For THIS population, with these cognitive patterns, these comorbidities, and this lived care reality, who can actually get to therapy, stay on therapy, and avoid worse downstream events?”

Anthony Pero

Almost — and the missing piece is timing. Who gets identified early ENOUGH. Because with Alzheimer’s and related dementias, late recognition can shut doors. Real-world data matters more in older adults precisely because delay is so costly. If you only discover the patient after multiple transitions, functional decline, and escalating symptoms, the window may look very different.

Andie Cartwright

The part I keep coming back to is who gets left out. Because whenever healthcare says “patient population,” there’s often an invisible asterisk: the neat patients, the reachable patients, the documented patients. Not always the people with the longest stays, the most complexity, or the messiest realities.

Anthony Pero

Yes. And that’s why our specially curated ADRD dataset matters. It gives pharmaceutical companies, government researchers, and independent investigators a way to study the populations that are often underrepresented in trials: older adults with multiple conditions, longer stays, functional limitations, behavioral symptoms, and complex care needs. If we want evidence that holds up in practice, those populations can’t be an afterthought.

Andie Cartwright

When you say “curated,” I don’t hear polished — I hear intention. Like, somebody decided this should be organized in a way that answers real research questions, not just sit there as a giant digital attic.

Anthony Pero

A giant digital attic is pretty good. But yes, intention. The data can be segmented into research categories that help investigators look across clinical and healthcare resource utilization outcomes, health-related quality of life, behavioral symptoms, health and lifestyle, medication utilization, social determinants of health and DEI profiles, comorbidities, and direct observations.

Andie Cartwright

The SDOH and DEI piece is important. Because if you can see social isolation, health literacy, age, gender, education, payer type — and combine that with diagnoses, cognitive measures, medication records, even observations like weight, blood pressure, pulse, blood sugar — then suddenly “equity” stops being a nice paragraph in a report. It becomes studyable.

Anthony Pero

And actionable. A researcher can ask: are certain groups being identified later? Are patients with specific comorbidity profiles using different medications? Do people with higher social isolation show different patterns in hospitalization or ED visits? Are realistic treatment pathways the same across payer types or educational backgrounds? That’s evidence generation that’s closer to life as it is lived.

Andie Cartwright

Which is also more honest. Because if the future of brain health only works for the healthiest, best-supported older adults, then we haven’t really solved the problem. We’ve just built a very elegant answer for the people least likely to need help navigating the system.

Anthony Pero

Yeah. And June always brings that into focus for me. Awareness is valuable. Stories matter. Early signs matter. Healthy habits matter. But if brain health starts long before a diagnosis, then maybe the real question is not whether we can observe Alzheimer’s better. It’s whether we’ll use data to change who gets helped — and WHEN.

Andie Cartwright

And that’s the real question, Anthony! On that note, I want to remind our listeners that accessing our data and really digging in is as easy as signing up for Study Buddy, our new AI-powered research tool!

Anthony Pero

That’s right, Andie! Right now, our listeners can sign up for free and try Study Buddy out! Simply sign up a the link in today’s episode description. Alright, this brings us to the end of today’s episode. Thanks, Andie.

Andie Cartwright

Thanks, Anthony. Bye Everyone!