Caregiver Education on Alzheimer Agitation Is Essential: A Q&A with Geriatric Nurse Practitioner Carolyn Clevenger

Agitation is among the most common—and most disruptive—neuropsychiatric symptom of Alzheimer disease, yet new data suggest it remains widely misunderstood by the very people most affected by it: family caregivers.

A national survey from the Alliance for Aging Research found that many caregivers do not recognize agitation as part of the disease process and often hesitate to report behaviors such as restlessness, verbal outbursts, or physical aggression to clinicians. This lack of awareness and communication contributes to the emotional strain caregivers report, with more than 90% describing agitation as overwhelming or exhausting.

Carolyn Clevenger, GNP, professor of nursing at Emory University’s Nell Hodgson Woodruff School of Nursing, spoke with Patient Care^© recently on the challenge that neuropsychiatric symptoms pose for caregivers and for clinicians, and importantly to the communication between these 2 individuals essential for a patient’s wellbeing and safety. Clevenger considers and sheds light on survey findings, drawing on her extensive background in geriatrics. In the following conversation, she underscores why agitation requires distinct recognition and management, how clinical workflows can better incorporate caregiver perspectives, and concrete steps primary care teams can take to intervene earlier and more effectively. Her insights offer a practical framework for addressing a symptom that not only affects patient safety and quality of life but also powerfully shapes caregiver wellbeing.

The following transcript has been lightly edited for style and flow.

Patient Care: The Alliance for Aging Research survey that was just published revealed an agitation blind spot in Alzheimer's care. Could you talk a little bit about what prompted that survey and also what they're defining as the blind spot?

Carolyn Clevenger, GNP: There are really two blind spots when it comes to agitation and Alzheimer's disease. You have the blind spot of lay people—people who find themselves responsible for supporting someone living with Alzheimer's disease. We would call them a caregiver, though they may not call themselves that just yet. They're often unaware that agitation is a symptom that's part of Alzheimer's disease. It's just off their radar entirely. And then we probably don't do them a big favor from the healthcare lens, because we don't necessarily ask about psychiatric symptoms broadly, and certainly not agitation specifically, even though we know so many people are experiencing those symptoms. So, it's just sort of off of everyone's radar until it presents to the point that we have to pay attention to it. It's one of those symptoms that we can ignore, or we try to ignore, and then it becomes unignorable.

PC: What are some of the primary symptoms of agitation?

Clevenger: Correct. It's part of those neuropsychiatric symptoms. You know, agitation has for a long time been a word we've thrown around kind of loosely, especially in long term care and supportive services. But we now have a clearer, expert-defined definition of what agitation in Alzheimer's disease means, and it's a cluster of behaviors and observations that we put into three categories.

The first is excess motor activity—fairly technical, but that might look like restlessness, pacing, or rummaging. The next category is verbal aggression, and I think many caregivers have experienced that. We know that a particular symptom has its own direct relationship to caregiver distress and predicts placement in institutional settings. And then the third category includes physical aggression—things like pinching, biting, or throwing objects.

We also think clinically that these symptoms often follow a progression. Someone who begins with restless behaviors, if untreated and unmanaged, may then progress to verbal aggression, which may escalate to physical aggression. That's when it becomes unignorable and is often finally on our radar.

PC: The survey report notes that many caregivers of people living with Alzheimer disease don't realize that agitation is a separate but related condition, distinctly different from cognitive decline. Three-quarters of the caregivers in the survey responded that they believe agitation requires the same care approach as memory loss, and that may be part and parcel of the under-recognition of agitation.

Clevenger: You're absolutely right. Our brains are so complex, and the areas where you form memories are different from the parts where you regulate emotions. The reality of Alzheimer's disease is that you have not only cognitive symptoms—thinking, processing, remembering, judging, reasoning—but you also have psychiatric symptoms and changes, which then lead to functional changes, meaning you need more help doing activities of daily living. So, there are three parts to that dementia syndrome in Alzheimer's disease.

The changes happening in the brain that are causing those cognitive changes, like memory and thinking and processing—that's a different part of the brain, different processes than what's involved in the pathology of agitation. The pathology of agitation is affecting the parts of the brain where we express and regulate emotions. Some of the deep brain structures are where we generate those emotions, and the upper part of the brain, the cortex, is where you then control them.

What we're seeing is a dysregulation of neurotransmitters—serotonin, norepinephrine, and dopamine—where sometimes we have overproduction or production targeting the wrong parts of the brain, which then leads to these agitation symptoms. So if you have a treatment, whether medication or non-medication, that is addressing the changes in neurotransmitters and parts of the brain that control memory—if you're trying to increase acetylcholine and target the hippocampus—that's very different than trying to target serotonin, norepinephrine, and dopamine in a different area of the brain.

When you think about it from the mechanism of action—both the mechanism of the symptom, what's generating the symptom, and how we would treat it—it seems more logical to understand why just managing cognitive symptoms is probably not going to help the management of these neuropsychiatric symptoms, specifically agitation.

PC: Certain symptoms of agitation seem to be more difficult for caregivers to discuss than others, and I'm thinking of some that you've already mentioned, that is yelling, outbursts of inappropriate language, incessant repetition of a question, and then the physical acting out. Do we know what's behind the reluctance of people to share this information, and should clinicians actually be proactively asking about these?

Clevenger: There are a number of symptoms in Alzheimer's disease, and the disease carries stigma on its own. Even things that we think in primary care are not necessarily stigmatizing—like forgetfulness or repetitiveness—can take a while to bring forward to your clinician. And of course, so much depends on the ongoing relationship with your clinician, which, for better or worse, means that you're most likely to have the longest relationship and trust with your primary care provider. So, it really is, I think, even more important for us in primary care to be the ones asking the question and making sure that the door is open for them to share that information.

This is multifactorial, like so many things in healthcare. We have both the recognition that agitation is, on its own, a symptom distinctly different than just memory loss. We have the stigma around it. And then in our usual way of providing care, we're so used to having just the patient alone with you, the provider, in the room. So, it's a big step to even bring that care partner into the visit along with you, or to make a pathway for them to share the symptoms they're observing at home with you, the clinician. Even if you can't have them in the exam room, if they do want to share concerns, changes, or behaviors they're seeing, do we have a pathway for them to get that message to you, the clinician they feel they can rely on?

And then if you do sort of get through that barrier and they're in the room together, it can be quite a source of tension. Now you have a care partner who has both the memory and recall of the behavior and can give you the specifics. They can tell you when it started, when it got better, what makes it worse—all the things you want to know in a symptom assessment. So that's your source of information. But they may not want to say that in front of the patient. Maybe the patient doesn't even remember that it happened. Maybe they have an entirely different interpretation of the situation. You can create this tense relationship between the two of them.

Now, you might think, well, a person with Alzheimer's disease will leave the visit and forget that they had this tension between them and their care partner during the visit. More likely they'll forget what the actual content of the conversation was, but the emotional memory will remain, and they will still have a terrible afternoon together after leaving your office. Nobody wants that.

So, in my practice, we discovered a long time ago that it made sense to create a pathway including a caregiver-only visit with the practitioner so that we could get the real truth of what's happening. And there are a number of other really good reasons that care partner needs time alone to give you the full story of the symptoms. Not every practice can do that from a workflow or financial perspective, and so there are other ways to do it, including maybe a questionnaire that prompts them—a written questionnaire they might complete in your waiting room. You can make the space in the room to openly discuss things. I've had conversations with the patient present depending on the status of the patient. Some families talk about things openly—that does happen. Or you create a way for them to put that in writing so that you know as the clinician. But you have to ask. As a clinician, if you don't ask the question, you're only going to hear about these symptoms when they have been escalating, potentially for weeks or months, and now we're in a crisis situation.

PC: About a quarter of the caregivers said that they believe nothing can be done about agitation, and some may, as is conventional wisdom, know about drugs that simply cause sedation. What message can clinicians offer to families now about what's actually possible?

Clevenger: I've never been a fan of the phrase "there's nothing we can do." I just don't think that's helpful, and it's not true. But I think sometimes people get that message from a variety of lived experiences, things that they've seen. There is always something we can do. Maybe this is a symptom to palliate. I'm really grateful that we are starting to see more awareness—increasing awareness that agitation is a symptom, that it is something that your healthcare team can help you with, that there are other service providers in this space who are present and ready to lend a hand and support families. And often when we hear more about treatments, new treatments in particular, it does bring people to a space where they say, "I'm going to raise my hand. I'm experiencing this. I'm seeing it." So I think that's another reason for my distaste of this phrase "there's nothing we can do," because it prevents people from stepping forward and really understanding how prevalent the symptom is, how they specifically are experiencing that symptom in their day-to-day life, and then creating an opportunity for our team—not just your individual provider, but our whole healthcare team—to be able to provide support.

PC: If you could give primary care clinicians 3 concrete action items based on the survey and your experience, things they could start doing tomorrow morning, what would those be?

Clevenger: Number one: for your patients who are living with Alzheimer's disease, be sure to engage and make space for their family caregivers. I know we always think of care as just you and the patient, but the reality is this is a dyad that you're caring for now, and you are going to need one to support the other. So make space to partner with family caregivers. They are your best partner in the management of your patient.

The second thing is, do not assume that if there's no problem mentioned, everything is fine, just because you're not hearing about it. We do have to be proactive in asking the questions. We want you to make the ask. We want you to ask about agitation in Alzheimer's disease specifically.

And then the third piece is to remember that Alzheimer's disease and dementia due to Alzheimer's disease is three parts. It is cognitive symptoms—memory, thinking, judgment—that affect your activities of daily living, your functional symptoms, and also neuropsychiatric symptoms. And agitation is the most common of those neuropsychiatric symptoms.

Agitation is not only one of the most common neuropsychiatric symptoms, it is the symptom that drives a lot of the caregiver distress independently and leads to institutional placement, which may also be accompanied by financial burden as well as guilt. And so, if there's one thing that you can target and address that will improve quality of life for the person experiencing the disease and the person or people supporting them, it's agitation. If you really have to prioritize your limited time in practice, this is one of those key areas that has a really good return for the investment of your time and attention.