Agitation in Alzheimer Disease: Proactive Assessment and Caregivers' Roles with Carolyn Clevenger, GNP

Agitation is among the most prevalent and consequential neuropsychiatric symptoms of Alzheimer disease (AD), affecting an estimated 40%–50% of individuals across the disease course and contributing substantially to caregiver burden and care transitions.^1-3 Recent data from the Alliance for Aging Research underscore how often these symptoms go unrecognized: many family and paid caregivers do not associate verbal or physical aggression, restlessness, or disinhibition with AD, which may delay clinical discussions and hinder timely, targeted management. These findings align with broader evidence that agitation is a major driver of emotional distress, sleep disruption, and early institutional placement for caregivers.⁴

In this video interview, Carolyn Clevenger, GNP, professor of nursing at Emory University’s Nell Hodgson Woodruff School of Nursing, discusses how primary care clinicians can translate these insights into concrete, actionable steps. She emphasizes 3 priorities: intentionally engaging family caregivers as essential partners in care; proactively asking about agitation rather than assuming its absence; and recognizing agitation as a core neuropsychiatric domain of AD that warrants dedicated assessment and management. As Clevenger notes, addressing agitation can measurably improve quality of life for both patients and caregivers—yielding clinical benefit that is well worth the small investment of time required to screen and intervene.

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

Patient Care: If you could give primary care clinicians 3 concrete action items based on the findings from the The Agitation Blindspot in Alzheimer’s Care survey and your experience, things they could start doing tomorrow morning, what would those be?

Carolyn Clevenger, GNP: Number 1: 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 3 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.

References

1. Alzheimer’s Association. 2023 Alzheimer’s disease facts and figures. Alzheimers Dement. 2023;19(4):1598-1695. doi:10.1002/alz.13016

2. Carrarini C, Russo M, Dono F, et al. Agitation and dementia: prevention and treatment strategies in acute and chronic conditions. Front Neurol. 2021;12:644317. doi:10.3389/fneur.2021.644317

3. Pless A, Ware D, Saggu S, et al. Understanding neuropsychiatric symptoms in Alzheimer’s disease: challenges and advances in diagnosis and treatment. Front Neurosci. 2023;17:1263771. doi:10.3389/fnins.2023.1263771

4. Lu X, Ye R, Wu J, Rao D, Liao X. Comparing behavioral and psychological symptoms of dementia and caregiver distress caused between older adults with dementia living in the community and in nursing homes. Front Psychiatry. 2022;13:881215. doi:10.3389/fpsyt.2022.881215