Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I’m Melanie Cole. And today, we’re giving insights on medication management in mild cognitive impairment and dementia, perspectives from patients and caregivers. Joining me is Dr. Rachel O’Conor. She’s an assistant professor of Geriatrics and in the Department of Geriatrics at Northwestern Medicine, and she’s a health services and public health researcher specializing in community-engaged research.

Dr. O’Conor, thank you so much for joining us again. With changing cognitive abilities, individuals with mild cognitive impairment and dementia face challenges in successfully managing multi-drug regimens. This is such a huge problem that we’re seeing. Can you tell us how common this is? What you’ve seen as a result of these incredible challenges?

Rachel O’Conor, PhD: Yeah, thank you, Melanie. It’s really a pleasure to be talking with you again today. So, I am excited to talk about a recent study that we did where we talked with individuals who have mild cognitive impairment as well as mild dementia and moderate dementia. And so, we talked with those individuals as well as their family members. As people’s memory and dementia progresses, they begin to work with their family members. We wanted to learn, kind of get both sides of the story. So since there are the two people involved, most people, like, they navigate it, but there can be a little bit of tension as well.

And so, what we found, and not necessarily so much like an issue, but really what we found was that caregivers, they take on more medication responsibilities with increasing cognitive impairment severity. So, not surprising, but that both patients and caregivers favor patient autonomy in medication self-management. So, even as dementia is progressing, and even among people with moderate dementia, both patients and caregivers really are trying to promote that patient autonomy, even to an extent that sometimes it was surprising to myself.

Melanie Cole, MS: I get that. I get patient autonomy, I really do. But as someone who had a 97-year-old father and so many relatives in their 90s and clients in their 90s, I see that challenge. What specific challenges have you identified do individuals with moderate dementia face when they’re managing these multiple medications?

Rachel O’Conor, PhD: Yeah, I think, as the disease is progressing, I think just as changes in cognition, many people who are enrolled in our study were taking between five all the way up to 15 medicines, and some people were taking medicines four times a day. And while patients’ family members would often set up their medicines, they’d obtain the medicines, set them up, have different types of supports. We found that a lot of our patients with moderate dementia who did not live with their family members actually were responsible for taking their medicines like at the time it was to take them. And this was often multiple times per day.

And so, I think this just can be very challenging—not only just for anyone, it would be challenging for myself—but with those changes in cognition, remembering to take a medicine, even a multi-drug medication regimen, four times a day, that’s quite challenging. And then, the other aspect that was very challenging is just navigating this transition and responsibilities for who is responsible for those different elements in taking medications. So, is the older adult responsible for filling their pill box, or is that moving over to their family member? Is the older adult responsible for remembering to take their medicine multiple times per day? And so, one area we found challenges was just kind of negotiating those transitions, and who was responsible for the different elements of taking medications.

Melanie Cole, MS: I’d like you to expand a little bit more on this study and the model that you used. Who was responsible?

Rachel O’Conor, PhD: So, what we found is that it kind of progressed over time with increasing disease severity. So people who have mild cognitive impairment, we found that the older adult or the patient was largely independent in taking their medicine, when the caregiver was not involved. And really, this was due to this perception; a lot of the times, the caregiver did not perceive a need to help with medication management. And then, as it was among our patients who had mild dementia, we found the older adult also, again, was pretty largely independent in taking their medicines. And the caregiver was, what I like to call peripherally involved, so they offer some help with the medicine, and they’re monitoring how the patient’s taking the medicines, or their family members taking the medicines. But again, that older adult is really primarily responsible.

And then, with moderate dementia, that older adult has kind of passed on responsibilities to their family member, and the caregiver is really actively involved. And this is largely because the caregiver really perceives a need to help and assumes the majority of responsibilities. So, these transitions largely, what we found, occurred largely around perceptions of capacity or in response to kind of adverse health events or pretty critical mistakes in medication-taking.

Melanie Cole, MS: That’s what I would worry about, is the critical mistakes. So as you’re looking at the key findings of the study, tell us where this went. What were those key findings and how family and caregivers can effectively support, as you say, peripherally medication management, so that there aren’t those mistakes?

Rachel O’Conor, PhD: Yeah, I think it’s a tough challenge. And I think these patient-to-caregiver transitions, they really were, as I mentioned, just reactive to patient errors. And I think, in a perfect world, these would occur proactively, but what I found is that many people, while they’re open to having more assistance with other types of activities, such as transportation or accompanying to doctor’s appointments or shopping, medications are kind of a sticking point: that this is one that people, both the older adult as well as family members, want the older adult to remain independent in. I think just in a sense of privacy, but also there’s something about medicines that seems to be a sticking point. In an ideal scenario, I think communication really would be a critical component, but what we found is that very few participants had proactive conversations about how these transitions may occur. And I think part of this can be challenging just with the nature of dementia, or changes in cognitive impairment. These changes can occur over many, many years. And so, these transitions may not need to happen for quite some time, or they may need to happen very quickly. And I think just this general preference for independence and retaining independence is just so strong.

I think because of some of the challenges just patients and family members face in trying to navigate these transitions themselves, communication or facilitating these conversations from clinicians really may help enable or facilitate these conversations, as people’s clinicians can be this kind of objective third-party person who can help walk people through these discussions. And I think really framing it in a way—that’s not so much about a loss of independence—but really framing it in a way that’s what someone may be gaining by these transitions, that someone may be able to stay in their home longer, because they may not have these adverse events or hospitalizations. So really, kind of switching the framing may help some of these transitions occur earlier.

Melanie Cole, MS: As you said earlier, this is a personal thing. It’s not like driving someone to the doctor or getting them to the grocery store. This is personal, because maybe there is antidepression meds involved. There’s all kinds of things that might feel personal to the patient. So when you say that clinicians can help facilitate this conversation, what are those steps? You’re speaking to other providers, Dr. O’Conor. So please, let them know when they are working with their geriatric patients and their family members, their caregivers, their loved ones, to simplify those medication regimens. Can you give them some of those steps that you use to help your patients and caregivers understand multiple medications so that mistakes don’t happen?

Rachel O’Conor, PhD: So, I think first just asking very broad probing questions about how patients and family members—about how patients are taking their medicines throughout the day. So, asking that very broad question about “walking me through how you take your medicines.” And really, if the person just responds with their morning medicine, asking again, “And how do you take it in the afternoon? And how do you take your evening ones?” And I think going through all those steps, it can elucidate who is responsible for different aspects and where there might be challenges, and also elucidate where regimens may be able to be simplified. I think also just discussing goals of care: so identifying what matters most to the patient and then working with the family member to see how that could be achieved.

And then, I think too, in trying to deprescribe or simplify regimens, one aspect that I think can be quite difficult is just managing some of the behavioral symptoms of dementia. This is what I found can be very important for family members. So, the use of medications and often psychotropic medications can be the first line of defense. And I think having conversations with family members just to understand goals of care, and that family members may be hesitant to removing these medicines. But really, discussing pros and cons, and how that relates to goals of care, could just inform prescribing decisions. And then, I think just trying to consolidate the number of times per day. As someone who’s taking medications, I mentioned earlier, a lot of the patients with moderate dementia actually were taking medicines four times per day, and really seeking to simplify or consolidate just the number of times a day a person has to take the medicine could really benefit both that patient and the caregiver.

Melanie Cole, MS: It certainly can. This is a very interesting study, and I thank you so much for joining us. Do you have some final thoughts you’d like to leave other providers with, key takeaways from the study that seeks to describe this challenge for patients and caregivers when they’re managing multiple medications?

Rachel O’Conor, PhD: I think what I would want to leave, like a final thought to leave everyone with, is just not assuming that caregivers are actively involved in all aspects of medication responsibilities: that just because someone has an involved family caregiver who is present at visits, they may not be involved in all aspects of medication-taking. And it just may be not feasible for them. And so, seeking to try to reduce the burden or even just the difficulty in taking all of these medicines, I think, is an important consideration.

Melanie Cole, MS: Thank you so much, Dr. O’Conor, for joining us today. And to refer your patient, or for more information, please visit our website at breakthroughsforphysicians.nm.org/geriatrics to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. I’m Melanie Cole. Thanks so much for tuning in today.