Episode 12: Data Driven Alzheimer's Disease and Dementia Care

Andie Cartwright

Welcome back to Better Living Through Data! I’m Andie Cartwright, and as always, I’ve got Anthony Pero here with me. Today we’re jumping into something that is really close to home for a lot of families—and, honestly, for anyone thinking about the future: the changing landscape of Alzheimer’s and related dementia care in our nursing homes. Anthony, I’ve been looking at some of the numbers over time, and, wow, it’s kind of a rollercoaster. Did you know that back in the late 90s, only about 30% of new admits and just 19% of long-stay residents with Alzheimer’s got donepezil? That feels so, so low.

Anthony Pero

Yeah, it’s wild. And then when you fast-forward to more recent data, we actually see antidementia drug use either declining or just kind of flattening out—from around the mid‑40% range down closer to the high‑30s in some datasets. So instead of this big upward curve with every new product announcement, we’ve watched enthusiasm taper off as people see, in real‑world practice, that these drugs often don’t work as well as hoped and can come with some pretty tough side effects. You’d expect the numbers to shoot up over time, but that’s not really what’s happened.

Andie Cartwright

Right. And you hear about all these breakthroughs, but then in practice, so many folks are still facing the same old barriers. I remember sitting down with a clinician during one of our PointClickCare strategy workshops—this wasn’t long ago, maybe last year—and we ended up just spiraling into this whole talk about how tough it still is to get the right dementia meds to residents. There’s the issue of polypharmacy, like people taking way too many medications, or concerns about whether the drugs are really working at all, or if the side effects are worth it. It’s like, so much has changed, and yet a lot hasn’t.

Anthony Pero

Yeah, exactly. And actually, that ties in with what we discussed in one of our earlier episodes—remember when we talked about systemic barriers and under-treatment in long-term care? It's not just about access, but about navigating, like, this complicated web of effectiveness, potential interactions, and treatment priorities.

Andie Cartwright

Totally. And those persistent challenges don’t just disappear with new guidelines or new meds. It feels like every improvement leads to three new “what-about-this” questions for clinicians and families.

Anthony Pero

So, let’s actually get into what our recent EHR study uncovered—because I think this is where it gets fascinating. We looked at, I mean, a massive dataset: over 359,000 residents who had an ADRD diagnosis. And—get this—about 73% of those residents actually received guideline-directed ADRD medication. That’s a lot higher than what claims data suggest, which usually lands somewhere around a third or so.

Andie Cartwright

Yeah, it’s a big difference. And I want to just pause there—because often, we see these super‑low numbers passed around from claims data, and that feeds into the whole idea that “no one’s getting treated.” But what we’re really seeing here is a bit of an apples‑to‑oranges comparison. In our study, we included a much broader basket of medications than just classic antidementia drugs. When you narrow it down to first‑line options like acetylcholinesterase inhibitors, the treatment rates we see today actually look a lot like what was being reported 15–20 years ago. So that 73% isn’t a sudden surge in disease‑specific therapy; it’s shining a light on how often clinicians are turning to other options—like antidepressants or antipsychotics—to manage the behavioral and mood symptoms that come along with dementia.

Anthony Pero

No, not by a long shot. So, when we dig into what influences the odds of getting treated, there are some pretty stark differences. For instance, if you have Lewy Body Dementia, you’re about three times more likely to be prescribed those guideline-directed meds compared to other ADRD diagnoses. On the flip side, if you’re taking diabetes medications, your odds actually drop by about 25%.

Andie Cartwright

I always find that fascinating. Like, it’s not just about what diagnosis you have, but your whole health profile—what else you’re dealing with, what other meds you’re on. That comorbidity piece looms large here; for some residents, maybe diabetes management takes precedence over dementia symptoms or something, so they deprioritize ADRD treatment?

Anthony Pero

Yeah, absolutely. And it gets even more granular when you break it down—age, race, where you live, insurance type. Actually, I was reading about a Midwest facility where they zeroed in on Black and Hispanic residents and used targeted, data-driven interventions to boost ADRD medication access. The result? They closed a gap that hadn't budged in years. It really shows what’s possible when you use the right information strategically.

Andie Cartwright

That reminds me of what we talked about in previous episodes around demographic disparities and how they’re not just numbers—they’re stories. The potential to actually fix them, at least a little, with targeted intervention is huge.

Andie Cartwright

So now let’s look at what all of this means for care decisions and policy—the “so what” that everyone asks. What stood out in the data for me was how much treatment really varies based on specific subtypes of dementia, other conditions like diabetes or hyperlipidemia, and, of course, the basic demographics like age and race. Honestly, we need tailored guidelines—it shouldn’t be one-size-fits-all anymore.

Anthony Pero

Could not agree more. And it’s definitely not just about individual clinicians making choices; you need multidisciplinary guidance. Especially when comorbid conditions can override ADRD symptoms on the priority list. If diabetes takes center stage, it can push dementia care decisions into the background. And when you look at which medications get used most, there’s a real mix—SSRIs come out on top at almost 30%, then acetylcholinesterase inhibitors, atypical antipsychotics, benzodiazepines, NMDA receptor antagonists—all playing their own roles in the ecosystem of dementia care. What you don’t see, though, is meaningful use of true disease‑modifying therapies, because we simply don’t have widely available, well‑established options that change the underlying course of ADRD in this setting yet.

Andie Cartwright

And it’s not just about ordering what’s familiar. Each class brings its own benefits and trade‑offs—and, importantly, most of what we’re using today is still about symptom management, not changing the disease itself. If clinical guidelines were updated more often—using this real‑world EHR data—I think we’d see even more refined treatment approaches and, hopefully, clearer pathways as truly disease‑modifying options emerge. There’s so much potential if policymakers, clinicians, even organizations like the Alzheimer’s Association, would collaborate. Honestly, I sometimes wonder if “evidence‑based guidelines” will actually catch up to what the data is telling us—and to the reality that we still have a long way to go before disease‑modifying treatment is a routine part of ADRD care.

Anthony Pero

Yeah, and you know, that’s kind of the dream. Bringing different groups together, using real numbers—like what we get from EHRs—to write better, clearer policies. Maybe that’s how we close the gap we’re always talking about, whether it’s demographic, diagnostic, or even just medication access.

Andie Cartwright

Absolutely. And it’s a conversation that isn’t over—we’re gonna keep digging into how data shapes care for all those folks who need it most. That’s it for today’s episode. Anthony, thanks for the insights as always—love debating this with you.

Anthony Pero

Always a pleasure, Andie. And thanks to everyone listening—we’ll catch you on the next one. Take care!

Andie Cartwright

Goodbye all!