Why Caregivers Don't Talk About Alzheimer Agitation, With Geriatric NP Carolyn Clevenger, GNP

The willingness of caregivers for individuals with Alzheimer disease (AD) to communicate with treating clinicians about agitation symptoms can be a signficant clinical challenge, according to Carolyn Clevenger, GNP, professor of nursing at Emory University's Nell Hodgson Woodruff School of Nursing, hampered by the persistent stigma associated with AD, logistical constraints, and caregiver guilt and fear of disclosure. The reluctance to discuss symptoms, reported by more than 30% of caregivers,¹ risks harm for them and for the patient, Clevenger explained in a recent interview with Patient Care:^© research demonstrates that disruptive behaviors such as agitation, aggression, and disinhibition are the most predictive factors for caregiver burden and depression.² Caregivers who do share behavioral concerns often report overwhelming emotional strain.

Clevenger emphasized that the dynamics of clinical visits further complicate disclosure. Traditional care models typically focus on patient-only consultations, a potent structural impediment to caregiver input. When caregivers are present, discussing behavioral symptoms in front of patients can generate tension and lasting emotional distress, even if the specific content is forgotten, Clevenger warned. Nearly 75% of family caregivers report that communication problems result in agitated reactions in their relatives with dementia,³creating a bidirectional challenge where communication difficulties both reflect and exacerbate agitation symptoms.

In this short video segement from our longer conversation wiht her, Clevenger addresses the multifaceted barriers preventing effective symptom reporting and emphasizes why primary care clinicians must proactively create pathways for caregivers to communicate behavioral changes before crises develop.

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

Patient Care: 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—yelling, outbursts of inappropriate language, incessant repetition of a question, and then the physically 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?

Carolyn Clevenger, GNP: 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 discuss things openly. 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.

References

1. Halsey G. Understanding Alzheimer Agitation: survey points to missed diagnoses and caregiver burden. Patient Care. November 13, 2025. Accessed December 1, 2025. https://www.patientcareonline.com/view/understanding-alzheimer-s-agitation-survey-points-to-missed-diagnoses-and-caregiver-burden
2. Cheng, ST. Dementia caregiver burden: a research update and critical analsysis. Curr Psychiatry Rep. 2017;19(64). doi:10.1007/s11920-017-0818-2
3. Savundranayagam MY, Hummert ML, Montgomery RJV. Investigating the effects of communication probelms on caregiver burden. J Gerentol. 2005;60(1):S48–S55. doi:10.1093/geronb/60.1.S48