What Agitation in Dementia Is Trying to Tell You: A Physician’s Take, Part 1

Dr. David Henley, MD, is an attending psychiatrist at Henry Community Health with more than 20 years of experience in adult and geriatric psychiatry. He has more than 13 years of experience leading Phase 2 and 3 Alzheimer’s disease clinical trials, with expertise in precision medicine, as well as extensive experience in Alzheimer’s medical affairs, and safety monitoring in the pharmaceutical industry. His clinical practice includes geriatric psychiatry and dementia care, and he supervises advanced practice nurses and psychotherapists providing psychiatric care across the lifespan. View his professional profile on LinkedIn.

What if you no longer recognized your home? Would you feel scared and what would you do? Perhaps you’d start anxiously pacing around and looking for something to remind you of where you are. 

If you couldn’t reorient yourself, maybe you’d go to the door and look outside for a landmark to help you remember. If you were still not sure, you might wander outside looking for your home.

What if you didn’t recognize your spouse or caregiver but still recognized you were at home? Might you wonder what this person is doing in your home? And if they tried to give you medicines or help you get undressed, would you get upset that a “stranger” is doing these things to you? How might you react? 

With dementia, and particularly dementia due to Alzheimer’s Disease, people lose their memories and orientation and as the disease progresses, commonly forget their loved ones and that they’re in their homes. When this happens, they respond just how you might in their shoes. 

It can be helpful to “put yourself in the person with dementia’s shoes” and ask, “How would I feel in this situation?” Ask yourself, “How would I react?” 

Dementia is the loss of brain function. It has many potential causes from accumulations of abnormal substances that are toxic to the brain cells (amyloid and tau proteins in Alzheimer’s Disease, alpha synuclein in Lewy Body Disease and Parkinson’s Disease, TDP43 and tau in Frontotemporal Dementia) or other damage to the brain from blood vessel disease (vascular dementia), lack of blood supply to the brain from cardiac arrest, or multiple head injuries damaging brain cells.  

Agitation is one of the most common and distressing behavioral symptoms in dementia. It can occur with any type of dementia, but it is particularly common with Alzheimer’s disease, where progressive injury to brain circuits involved in memory, orientation, recognition, judgment, and learning can make the world feel increasingly unfamiliar and threatening. 

This can result in pacing, restlessness, irritability, verbal resistance, suspiciousness, attempts to leave the home, or sudden distress during bathing, medication administration, meals, or changes in routine.

A useful starting point is to view agitation not as a diagnosis but as a signal. In many cases, the behavior may be communicating any of the following or a combination:

• fear, 
• confusion, 
• pain, 
• overstimulation, 
• impaired insight into one’s deficits, 
• loss of touch with reality (psychosis), 
• medication side effects, 
• sudden onset confusion related to medicines or illness (delirium), 
• or a mismatch between the caregiver’s approach and the person’s ability to understand what is happening. 

Start with the history

The doctor will need to understand what happened leading up to an episode of agitation. These family observations are crucial: they are the key to understanding the potential cause of the agitation.

What happened before the agitation began? What was the person being asked to do? Where were they? Who was present? Was the environment noisy, crowded, unfamiliar, dark, or overstimulating? Has there been a medication change, poor sleep, constipation, pain, infection, dehydration, hunger, or a change in routine? What helped the person settle? What made the situation worse? 

Sudden onset or worsening behavioral change should prompt evaluation for medical illness, pain, medication effects, environmental triggers, or unmet needs. 

Common causes and behavioral responses

Fear from disorientation

As Alzheimer’s disease progresses, the person may lose the ability to learn new information, recognize the home as familiar, or understand who is present and why. 

Agitation often peaks as disorientation worsens. Sundowning is a common example: the person may walk around the house in the evening looking for something familiar, go to a door or window, step outside and ultimately wander outside to look for landmarks or their home. 

No longer recognizing their surroundings and wandering in search of landmarks can result in getting lost, falling, or exposure to extreme weather.

Environmental change can have the same effect. A family vacation, a visit to relatives, hospitalization, a new caregiver, or a move to long-term care may remove the familiar cues the person relies on to feel safe. 

For instance, they may not recognize a caregiver and become upset, asking: “Who is in my house?” “Why are they telling me what to do?” “Why is this person trying to undress me, feed me, or give me medicine?” If you think about how you would feel if you couldn’t recognize the people or place around you, an anxious/agitated response is understandable. 

Behavioral approaches to agitation from fear and disorientation should emphasize reassurance, familiarity, and safety. Familiar objects can be powerful anchors: a piece of furniture the person built, artwork they made, a family photograph that has hung in the same place for years, or another emotionally meaningful cue. Emotional memory may be retained longer than short-term factual recall, so these objects may calm the person even when verbal reorientation fails.

For nighttime disorientation, practical strategies include listening to soft, low-volume music. When the person awakens, they will be more likely to recall that they are where they started when going to sleep. A nightlight that is bright enough for orientation but not so bright that it disrupts sleep, and removing or covering of mirrors if reflections are misinterpreted as scary, are also helpful. 

If fear and anxiety remain severe despite behavioral measures, medication may sometimes be appropriate, but the target symptom should guide the choice. For example, anxiety-driven agitation is different from psychosis-driven agitation.

Overstimulation and reduced stress tolerance

Many people with Alzheimer’s disease gradually lose the ability to filter noise, interpret competing conversations, tolerate crowds, or adapt to rapid changes in routine. Large family gatherings, crowded restaurants, busy stores, long trips, and unfamiliar settings may be overwhelming. Families often notice that the activities that once brought joy to the person may now produce anxiety, irritability, or exhaustion. 

The goal is not to eliminate meaningful activity, but to adapt it. Shorter visits, quieter rooms, smaller groups, predictable routines, rest breaks, and leaving before exhaustion sets in can preserve enjoyment while reducing agitation. If long-term care becomes necessary, transitional objects can help. 

For example, one patient who could not bring her pet cat to long-term care accepted a stuffed cat that resembled her own. She carried it with her, spoke to it, and introduced it to others — the object became a calming bridge into an unfamiliar environment.

In part two of this two-part series, to be published next week, Henley discusses how to respond to behavioral agitation in dementia.”