What Dementia Behaviors Are Really Telling You

My mom used to roast chickens for the family. She saved every carcass, intending to make soup later, the way she always did. But later never came.

The carcasses piled up in the back of the freezer until it became a running family joke, the kind where everyone laughs but no one really talks about what is happening underneath. On one particular clean out, we counted twenty-seven!

That was early.

One of the first dementia-related behaviors we would learn to live with, though we did not have a name for it yet.

Before the butter packets she collected from every restaurant visit. Before the jelly packets. Before we moved her into assisted living and the hoarding followed her there. Only now it looked different. Wrapped up leftovers from the dining room. Uneaten food packed into a small refrigerator that no one ever opened for the right reasons.

She would ask the staff to pour her unfinished water into paper to-go-cups, cover them with plastic wrap, and tuck them in beside everything else. We would clean it out. Two days later, it would be full again.

If you are a family caregiver trying to make sense of dementia-related behaviors, how can you address the dementia-related behaviors? Here is what we have learned from living this:

Behaviors are not the person. They are the disease acting on a brain that can no longer regulate itself.

Nearly every behavior communicates something, whether it is pain, fear, confusion, or the loss of a routine that used to feel safe.

Your response matters more than you might think. Match their pace. Get in their space instead of trying to bring them to yours.

Some days the best you can do will not feel like enough. Those days still count.

What's Really Happening When Dementia-Related Behaviors Change

Dr. Justin Mutter, MD

When a person living with dementia becomes anxious or accusatory, or begins pacing the house at midnight, we are not witnessing a personality change. We are seeing the visible surface of deeper damage to structures that most of us never think about until they stop working.

Research tells us that behavioral and psychological symptoms affect up to 90% of people living with dementia at some point in the course of their illness. Ninety percent. That number alone should change how we think about these experiences. They are not unusual, and they are not a sign that something has gone uniquely wrong in your family. They are, in a very real sense, part of the disease itself, driven by imbalances in the neurological systems that regulate mood, perception, and impulse. They are also–and here’s perhaps the hardest part–integrally connected to how the person living with dementia is experiencing the world around them. They are driven by the disease, but reflective of our loved one’s reality.

This is why behaviors are so variable across the spectrum. Some experience calm forgetfulness, rarely exhibiting signs of agitation or frustration. To us, they may seem very emotionally distant or disconnected; in the medical world this is sometimes called (with only partial accuracy) “withdrawal” or “apathy.” Others experience significant visible emotion, becoming anxious or even depressed. I have cared for patients with varying frequency and intensity of visual hallucinations and apparent paranoia. And these behaviors can fluctuate within the course of a day and night. What’s more, behavioral changes often shift as the disease progresses through its stages, which is why managing dementia behaviors requires flexibility — a strategy that works today may need modification six months from now.

Our challenge, then, is not to “manage” behaviors. It is to first listen to what they might be telling us. This is no easy task. But the good news is that knowing our loved ones well can often provide key clues. Stories abound from caregivers who, after understanding the root of a behavior or set of behaviors, come up with creative ways to alleviate their care recipient’s stress. Recently, on social media, I came across a story about a retired teacher living with dementia. I’ll call her Sue. She had been an outstanding educator, winning many awards throughout a career devoted to her students’ learning. In the mornings, her caregiver noticed she would often seem agitated or distressed, even angry. Listening and exploring gently through conversation, the caregiver realized that Sue, in these moments, felt that she needed to be at school, working with her students. That was her reality, strongly connected to her sense of personhood. So in the mornings, the caregiver gave her papers to grade and other teacher-related activities. The morning distress dissipated. Rather than try to adapt Sue to our world (which is our common and understandably reflex reaction), the caregiver shifted her environment to match Sue’s.

Sometimes, though, we have to dig even deeper to discover the source of behaviors. I once cared for a patient, whom I’ll call Tim (modifying some details so as to protect his identity), who had moderate Alzheimer’s dementia. Some with Alzheimer’s start to experience difficulties with expressive language more substantially than others. That was the case with Tim. When he spoke, sometimes it sounded like a word salad. When he moved into a memory care community, I started to receive calls from the nursing staff that Tim was becoming “agitated and angry” on a regular basis. This surprised me: I had never seen Tim like that, nor had his daughter, who had been his only caregiver for years before he made the move.

Tim came with his daughter to the clinic. He was his usual self: smiling, gregarious, and still exhibiting what in medical terminology is called an “expressive aphasia.” He struggled to communicate through language. But both his daughter and I knew how to understand him: listen carefully, try hard to follow his train of thought wherever possible, validating his attempts at communication at every turn of the conversation, even when we weren’t sure what he was trying to say. Interpretation was hard, but it was possible. Most importantly, Tim was looking for non-verbal signs of our engagement: reciprocal smiles, laughter, and positive body language.

My hunch was that this was not happening in his new community, so I made a house call. It was worse than my hunch: not only were the care staff neglecting to try to understand him, but also they assumed that because his expressive language was impaired, his ability to understand them was also impaired. They were communicating with him as though he was eight years old, instead of eighty. But Tim’s disease hadn’t, in fact, affected his receptive language: he understood quite well every single word you said to him. His “agitation and anger” was directly related to this situation. An extrovert by nature, he wanted to be heard. And he wanted his new caregivers to know that he heard them all too well. We all needed to understand his world better, and try our best to live in it with him.

Listening and careful interpreting, then, are the most important first steps in dealing with dementia behaviors. But how does this play out across the vast spectrum of such behaviors? In the coming weeks, we will post more specific insights about more specific behaviors, from agitation and anger, to anxiety and depression, withdrawal and apathy, and lastly (and perhaps most difficult): paranoia and hallucinations. We will also invite you, if you are interested in and comfortable with doing so, to share your stories of caring in the midst of dementia-related behaviors. One of the upsides to the fact that such behaviors, as we’ve noted, are very, very common, is that wisdom abounds in the caregiving community. Every day across the nation, care partners are exploring creative ways to adapt their worlds to those for whom they care. Tell us your story: we will learn from one another.

The Behaviors Nobody Prepares You For

You read about behavioral changes in dementia and you think you understand what is coming. Aggression. Wandering. Sundowning. Paranoia. Words on a page. But you do not understand them until they happen in your living room, to someone whose face you have loved your whole life, and the person behind those eyes is not quite the same anymore.

Nobody told me that my husband would come home one evening, quiet in the way that means something happened, because my mother hit him while he was driving her back to memory care. She thought she was being kicked out of her own home. Scared and angry, she hit him. It was the first and only time. What broke his heart was not the hit. It was knowing that the woman who did that would never have done it. Not in a million years. Not without this disease.

Nobody told me that my own mother would look me in the eyes and call me a terrible daughter for taking her home after a visit. That the repetition of it, the same words over and over in the car, would settle into the part of me that already carries guilt for everything I cannot fix.

What surprised me most was not any single behavior. It was how each one carried its own kind of grief. The hoarding was strange and sometimes funny. The accusations cut. The anger was frightening. And underneath all of it was a woman who was scared, living in a world that kept making less sense to her every day.

If you are in the middle of this right now, I want you to hear something before we go any further. What you are feeling is not a sign that you are failing. It is a sign that you are paying attention.

Aggression and Anger

My mother was never an angry person. She still isn’t, really, not underneath. But the disease has given her a shorter fuse, and when she feels threatened or confused, she is more likely to let it out than she ever was before.

The worst of it happened in the car. My husband was driving her home after a family visit, and she believed she was being kicked out of her house. There was no reasoning with her. She was upset in a way that had no off switch, and she hit him. He could not pull over safely. He could not explain. He just drove and absorbed it.

He did not come home angry. He came home quiet. Because that was not her.

What we have learned: do not argue. You will never win an argument with someone living with dementia. Don’t try to talk someone out of a feeling that their brain is telling them is real. Lower your voice. Slow down. Make your body calm even when you are not. If she thinks she is being kicked out of her home, no amount of logic will change that in the moment. You can only be steady and wait for the wave to pass.Some days the wave doesn’t pass quickly. Those are the days you sit in the driveway for a few minutes after you get home, just breathing.

Wandering and Restlessness

My mom didn’t wander much on her own. She moved around mostly to find my dad, and with him usually by her side, it rarely became a problem. The wandering started when he went to the hospital and we arranged in-home care for her. Without him there, she wanted to go out looking for him. That’s when we realized how much her daily calm depended on his presence.

Having an in-home caregiver helped. Not as a replacement for my father, but as a steady presence in the house. Finding the right person was its own challenge. We needed someone who understood dementia, not just someone who could be there, but someone who knew how to be there. She still moved around, but the caregiver turned her wandering into walks, giving her comfort, purpose, and a little bit of joy along the way.

Sundowning — When Evenings Become the Hardest

Before we had a name for it, we could see it happening. My mom would have a good day. A family gathering, grandkids visiting. And by late afternoon, something would shift. She would become more agitated, more confused, harder to reach. For a long time, it felt like it came out of nowhere, and it was one of the most exhausting and frustrating parts of our days.

What we eventually figured out on our own, before we had any clinical language for it, is something Dr. Mutter calls cognitive reserve. It works the same way it does for any of us after an overwhelming day at work, except the threshold is so much lower. For my mom, something as simple as a family lunch is the equivalent of presenting at a conference of thousands of people where you have to be on all day long. By the time she gets home, her reserve is spent. There is nothing left.

Once we understood that, we changed how we did things. We moved activities to earlier in the day. At family gatherings, we made sure there was a quiet room where she could be with one or two people instead of sitting in the middle of a house full of grandkids running around. We didn’t just encourage her to take breaks. We built them into the plan and made sure they actually happened.

For our full guide to sundowning, including why evenings are the hardest and what the research says about managing it, read Why Evenings Are the Hardest.

Paranoia, Accusations, and Hallucinations

Things go missing. That’s how it starts. A ring, a grocery bag, a watch. When my mom can’t find what she’s looking for, the story her brain creates is that someone stole it. I can’t count how many times we’ve heard this. The item wasn’t stolen. She simply hid it or hoarded it somewhere she doesn’t remember and when it isn’t where she expects, the only explanation that makes sense to her is theft.

The wedding rings were the hardest. She would lose them, and the panic was real and deep. Those rings meant something that her declining memory could not take from her. So we got her new rings, cubic zirconias that looked close to the originals. We didn’t tell her. She never noticed.

That was when something shifted in how we thought about honesty.

Early on, we promised ourselves we would always tell her the truth. Lying felt like one more thing we’d be taking from her on top of everything the disease had already taken. But over time, we saw it differently. When she’s panicking about a lost ring and you can hand her one that looks like what she remembers, what exactly are you protecting by insisting on the whole truth? Your own sense of integrity, not hers.

Respecting someone living with dementia means helping them feel safe in the moment they are in right now. Promises we made years ago were made without knowing where we’d be today. Our job is to keep her safe, mentally and emotionally, and to love her. Sometimes that means not telling the full truth. And that’s okay.

My father is a different story. His cognitive changes crept up so slowly that we barely noticed at first. He has Parkinson’s disease and is now on hospice, and he has developed hallucinations in the past couple of months. But here’s what’s different: he notices when he’s confused. One evening he kept insisting there was a horse on the ceiling. I knelt beside him and gently said, “There’s not a horse there.” He took a deep breath, nodded, and seemed to relax. Moments like that bring him real comfort. Not every person living with dementia or cognitive changes has that kind of awareness. If yours does, it really changes how you respond and what brings them reassurance.

Repetition, Hoarding, and Hiding

At first, we thought the repetitive questions were passive-aggressive. “Are you going to eat your breakfast?” asked for the third time in ten minutes felt pointed. But as the questions kept coming, it became clear they weren’t about attitude. They were the disease.

For my mom, the repetition almost always circles back to routine. “Is it time to go yet?” “We have to leave now.” It doesn’t matter if the next thing is a doctor’s appointment or a visit with family. Any break from what she expects triggers the loop, and once it starts, it doesn’t stop on its own.

Here’s what works for us: slow your pace. Match theirs. Step into their space instead of trying to pull them into yours. If what they’re repeating isn’t accurate, don’t correct them. Focus on the feeling underneath the words. The question is never really about breakfast or the schedule. It’s about comfort, control, or a fear they cannot name.

This is harder than it sounds, especially the fourteenth time through. Sometimes the repetition twists into anger. My mom sometimes believes she lives with us, and when we drive her back to her community, the loop can turn fierce. “Why are you kicking me out? You are a terrible daughter.” Over and over. Mix that with the guilt that lives in every corner of caregiving, and some days it just stinks.

The hoarding follows a similar rhythm underneath. What started with twenty-seven chicken carcasses in the back of a freezer became butter packets and jelly packets collected from every restaurant visit. At assisted living, it was leftovers from the dining hall packed into her apartment refrigerator until nothing else would fit. Water poured into paper cups. Plastic wrap over everything. We cleaned it out, and it filled back up before the week was over. Over time, it moved to dirty clothes. Then to anything that seemed to provide comfort.

I don’t think she was hoarding things. I think she was holding on.

The Quiet Behavior Nobody Talks About — Apathy and Withdrawal

I am lucky that my father still shows so much empathy, even on days when he feels down. My mother, who has always been the most empathetic person I know, the woman who could have strangers crying in her arms in the grocery store line and know exactly what to say, is different now. Her ability to read emotions, to respond with a comforting hug or the right words, has changed.

I remember the day a woman at church gave me a “mom hug.” Just what I needed, but it hit me. I was grieving for my mother’s real hug, not just the motion. Some days she misses cues when I or others are sad or stressed. Other days, glimpses of the mom I know shine through, and those hugs feel even more precious.

If you are watching this happen, pay attention to what remains. My mother may not initiate a hug anymore, but she still receives one. She may not ask to hear music, but her face changes when it plays. Build the day around those moments. They are still there.

Protecting Yourself While You Protect Them

Some of this is going to be really awful, and that doesn’t mean you’re doing it wrong.You can’t calm your mother if you’ve been running since six in the morning without a pause. You can’t absorb being called a terrible daughter if you haven’t slept in two days. Research confirms what we already know in our bones: behavioral symptoms are the single strongest predictor of caregiver burden, stronger than memory loss, stronger than physical decline. The pieces just don’t fit, and pretending they do is how people break.Ask for help. Not someday. Now. Not because you’re weak, but because this was always too much for one person, and it was always going to be. If you’re starting to feel the signs of burnout, that’s not failure. That’s your body telling you the pieces don’t fit.When the hard days come, remember what I said earlier about truth and honesty. Your job isn’t to be perfect. It isn’t to fix what this disease has broken. It’s to love someone through it and keep them safe while they’re here. Some days that looks like a well-managed routine where everything goes according to plan. Some days it looks like crying in your car after drop-off and then showing up again tomorrow. And if the nights are the worst part, know that you’re not imagining it. Sleep disruption from nighttime behaviors is one of the hardest things caregivers face.

Both of those count.

You’re not alone in this. I know it feels that way. I know the late-night version of caregiving is the loneliest thing there is. But you’re not.