Behavioral changes in dementia follow a rough but recognizable pattern, moving from subtle personality shifts and mood disturbances in the early stage, through agitation, wandering, and sundowning in the middle stage, to communication loss and pain-driven behaviors in the late stage. Up to 90 percent of all dementia patients will experience behavioral and psychological symptoms at some point during their illness, and 56 percent of Alzheimer’s patients deal with four or more symptoms simultaneously. If you are watching someone you love become irritable, suspicious, or withdrawn and wondering whether this is normal, the short answer is that it almost certainly is part of the disease, and understanding what comes next can help you prepare rather than simply react. Consider a daughter who notices her father has stopped attending his weekly poker game, snaps at his wife over minor things, and seems oddly suspicious about the neighbors. She might chalk it up to aging or stress. But these are textbook early-stage behavioral markers, and recognizing them for what they are can mean the difference between getting help now and scrambling during a crisis later.
This article walks through what behaviors to expect at each stage, why they happen, what the research says about managing them, and the toll they take on caregivers. None of it is comfortable reading, but honest information beats cheerful vagueness when you are the one living with it. With 7.2 million Americans age 65 and older currently living with Alzheimer’s disease and projections reaching 13.8 million by 2060, the number of families navigating these behavioral changes will only grow. The disparities are stark as well. Older Black Americans are about twice as likely to develop Alzheimer’s or other dementias compared to older White Americans, and older Hispanics are about 1.5 times as likely. This is not a problem that affects everyone equally, and it is not one that can be addressed with generic advice alone.
Table of Contents
- What Behavioral Changes Actually Look Like in Early-Stage Dementia?
- Middle-Stage Behavioral Symptoms and Why They Peak When They Do
- Late-Stage Behaviors and the Problem of Unrecognized Pain
- Managing Behavioral Symptoms Without Reaching for Medication First
- Why Behavioral Symptoms Cause More Caregiver Burnout Than Memory Loss
- Racial and Ethnic Disparities That Shape the Behavioral Landscape
- What the Next Decade of Dementia Behavioral Research Looks Like
- Conclusion
- Frequently Asked Questions
What Behavioral Changes Actually Look Like in Early-Stage Dementia?
The earliest behavioral changes are easy to misread. Depression and anxiety are the most common symptoms in mild dementia, largely because people at this stage still have enough awareness to recognize that something is wrong with their own minds. Apathy, which shows up as a loss of interest in hobbies and social withdrawal, is one of the earliest behavioral markers. These sustained personality changes can persist for six months or more before anyone connects them to a neurological cause. Research from UCI MIND has documented that early changes also include increased irritability, suspicion, mood swings, and reduced empathy, shifts that families often attribute to stress, retirement adjustment, or just getting older. Here is where it gets tricky. In behavioral-variant frontotemporal dementia, empathy and social judgment are affected first while memory remains largely intact.
A person might say something shockingly rude at a family dinner, make an inappropriate comment to a stranger, or stop caring about a spouse’s feelings entirely, all while remembering names, dates, and appointments perfectly well. This pattern is the opposite of what most people expect dementia to look like, which is why it often goes undiagnosed for years. If someone’s personality has fundamentally changed but their memory seems fine, that does not rule out dementia. It may actually point to a specific type. The overall pooled prevalence rates across all stages tell a useful story about which behaviors are most common. Apathy leads at 32 percent, followed by depression and anxiety tied at 29 percent, irritability at 27 percent, and agitation or aggression also at 27 percent. Sleep disorders affect about 21 percent, delusions 19 percent, hallucinations 12 percent, and disinhibition 9 percent. These are averages across the full course of illness, but the distribution shifts dramatically as the disease progresses.
Middle-Stage Behavioral Symptoms and Why They Peak When They Do
The relationship between behavioral symptoms and cognitive decline is not a straight line. BPSD prevalence actually peaks in the middle stages of dementia, meaning the worst behavioral disruptions tend to hit when a person has lost enough cognitive function to be confused and frightened but retains enough awareness and physical ability to act on those feelings. This is the stage that breaks caregivers, and the research confirms it. Sundowning, the pattern of late-afternoon and evening confusion and agitation, affects between 20 and 45 percent of Alzheimer’s patients living at home. In institutional settings, rates exceed 80 percent. It is among the most common reasons families make the decision to move a loved one into a care facility, because managing someone who becomes increasingly agitated, confused, and sometimes combative every single evening is physically and emotionally unsustainable. Wandering occurs in 35 to 60 percent of people with dementia at least once and is the most common disruptive behavior in institutional settings.
Suspiciousness, delusions, compulsive and repetitive behaviors like hand-wringing or tissue shredding, and sleep-wake cycle reversals all become prominent during this stage. However, not every person with dementia will experience all of these symptoms, and the severity varies enormously. If a person with moderate dementia is not sundowning or wandering, that does not mean the disease is not progressing. It means their particular pattern is different. The danger of stage-based guides, including this one, is that they can create expectations that do not match an individual’s experience. Use them as a general map, not a checklist. If a behavior shows up earlier or later than expected, or never shows up at all, that is within the range of normal for this disease.
Late-Stage Behaviors and the Problem of Unrecognized Pain
In severe dementia, verbal communication is drastically diminished. Individuals lose the ability to respond meaningfully to their environment and can no longer carry on conversations. The behavioral landscape shifts accordingly. Aggression tends to increase in advanced dementia even as other symptoms like depression may decrease, a pattern that can confuse caregivers who expected the late stage to be quieter. End-of-life behavioral changes include increased restlessness, pacing, yelling, and pulling at sheets or clothing, behaviors that are often signs of distress rather than random agitation. One of the most critical and most frequently missed issues in late-stage dementia is pain.
Because verbal communication is lost, pain gets expressed through behavioral cues: moaning, grimacing, sweating, and restlessness. A person who suddenly becomes agitated or aggressive in late-stage dementia may have a urinary tract infection, a toothache, constipation, or a pressure sore that they simply cannot tell anyone about. The Alzheimer’s Society UK emphasizes that recognizing these cues is essential for end-of-life care, yet in practice, pain in late-stage dementia patients is routinely undertreated because the behavioral signals get interpreted as just part of the disease. Difficulty swallowing and loss of the ability to self-feed are among the most significant late-stage changes, and they carry behavioral implications as well. A person who pushes food away, turns their head, or becomes agitated during meals may be experiencing discomfort or fear rather than simply refusing to eat. Families facing these moments need clinical guidance, not just reassurance, because the decisions involved, including whether to pursue a feeding tube, are among the most difficult in all of medicine.
Managing Behavioral Symptoms Without Reaching for Medication First
Non-pharmacological interventions are recommended as first-line treatment for behavioral and psychological symptoms of dementia before medications, and the evidence base for this approach has grown substantially. Symptom-specific approaches have shown real results: music therapy for depression and anxiety, exercise for overall symptom reduction, aromatherapy for agitation, and reminiscence therapy for depression. These are not feel-good suggestions. They are backed by systematic reviews and clinical guidelines. The tradeoff is that non-pharmacological interventions require time, consistency, and often a level of caregiver energy that may not be available. A family caregiver who is already exhausted and managing sundowning every evening may not have the capacity to implement a structured music therapy program.
Institutional settings have more resources for these approaches, but not all facilities use them consistently. A 2025 clinical practice guideline for the pharmacological treatment of BPSD was published, addressing medications for agitation, psychosis, and depression in dementia. Medications carry real risks, including increased fall risk, sedation, and in some cases elevated mortality, but they also provide real relief when behavioral symptoms are severe enough to endanger the patient or caregiver. The honest answer is that most people end up needing some combination of both approaches, and the right balance depends on the specific symptoms, their severity, and what resources are actually available. There is no version of this where you find the perfect intervention and the behavioral symptoms go away. The goal is reduction and management, not cure. Families who understand this from the beginning tend to cope better than those who keep searching for the thing that will fix it.
Why Behavioral Symptoms Cause More Caregiver Burnout Than Memory Loss
Behavioral symptoms are the number one predictor of caregiver burden, outweighing cognitive decline and functional impairment. This finding surprises people who assume that memory loss is the hardest part of dementia caregiving. It is not. You can adapt to someone forgetting your name. It is much harder to adapt to someone accusing you of stealing from them, hitting you during a bathing routine, or pacing the house at three in the morning. Research from BMC Geriatrics found that 68 percent of caregivers report activities of daily living impairments as most problematic, followed by behavior problems at 50 percent, cognitive issues at 45 percent, and communication problems at 36 percent. Among the behavioral symptoms, disruptive behaviors such as agitation, aggression, and disinhibition are the most distressing for caregivers, followed by delusions and mood disturbances.
The emotional toll is compounded by the fact that these behaviors feel personal even when they are not. When your mother accuses you of poisoning her food, the rational part of your brain knows it is the disease. The rest of your brain still absorbs the blow. A warning: caregiver burnout from behavioral symptoms does not always look like what you expect. It can show up as detachment, impatience, resentment, health problems, or a quiet erosion of the relationship long before anyone asks for help. If you are a caregiver reading this and recognizing yourself, the behavioral symptoms you are managing are objectively the hardest part of this disease. That is not a personal failing. It is what the data shows.
Racial and Ethnic Disparities That Shape the Behavioral Landscape
The behavioral symptoms of dementia do not exist in a vacuum. They play out within healthcare systems that do not serve everyone equally. Older Black Americans are about twice as likely to have Alzheimer’s or other dementias as older White Americans, and older Hispanics are about 1.5 times as likely.
These disparities mean that communities already facing barriers to healthcare access, including fewer dementia specialists, less insurance coverage, and cultural stigma around cognitive decline, are disproportionately affected by the behavioral challenges described throughout this article. A family managing sundowning and wandering needs access to respite care, behavioral health support, and eventually institutional placement options. When those resources are less available, less affordable, or less culturally appropriate, the burden falls more heavily on informal caregivers, typically women, who absorb the costs with their own health and financial stability. Any honest guide to dementia behaviors has to acknowledge that the experience of managing these symptoms varies dramatically depending on who you are and where you live.
What the Next Decade of Dementia Behavioral Research Looks Like
With the Alzheimer’s patient population projected to nearly double by 2060, the research focus on behavioral symptoms is intensifying. The 2025 clinical practice guideline for pharmacological treatment of BPSD represents a significant step toward standardizing care that has historically been ad hoc and inconsistent. Meanwhile, the growing evidence base for non-pharmacological interventions is pushing healthcare systems to integrate music therapy, structured exercise, and environmental modifications into standard care plans rather than treating them as optional extras.
The honest outlook is that behavioral symptoms will remain the most challenging aspect of dementia care for the foreseeable future. No drug or therapy eliminates them entirely. But the trajectory of research suggests that we are moving toward more precise, symptom-specific interventions and better caregiver support systems. For families in the thick of it right now, the most useful thing may simply be knowing that what they are experiencing is well-documented, widely shared, and not something they need to navigate alone.
Conclusion
Behavioral changes in dementia follow a general progression from mood disturbances and personality shifts in the early stage, through agitation, sundowning, and wandering in the middle stage, to communication loss and pain-expressed behaviors in the late stage. Up to 90 percent of patients will experience these symptoms, and they are the single biggest driver of caregiver burden. Non-pharmacological interventions are the recommended first approach, but medication has a legitimate role when symptoms are severe. The experience of managing these behaviors is shaped by access to resources, support systems, and healthcare equity.
If you are caring for someone with dementia, learn the behavioral patterns for each stage not so you can predict exactly what will happen, but so you are not blindsided when it does. Talk to their medical team about both non-drug and pharmacological options. Build a support network before you need one urgently. And understand that the behavioral symptoms, not the memory loss, are likely to be the hardest part of this journey. Knowing that in advance does not make it easy, but it makes it less isolating.
Frequently Asked Questions
At what stage of dementia do behavioral symptoms become most severe?
Behavioral and psychological symptoms of dementia tend to peak during the middle or moderate stage. The relationship between symptoms and cognitive decline is non-linear, meaning behaviors like sundowning, wandering, and agitation are often at their worst before the most severe cognitive losses occur.
Is aggression a normal part of dementia?
Yes. Agitation and aggression affect roughly 27 percent of dementia patients overall, and aggression tends to increase in advanced stages even as other symptoms like depression may decrease. It is almost always driven by confusion, fear, pain, or environmental overstimulation rather than intentional hostility.
What is sundowning and how common is it?
Sundowning refers to a pattern of increased confusion, agitation, and behavioral disturbance in the late afternoon and evening. It affects 20 to 45 percent of Alzheimer’s patients at home and more than 80 percent in institutional settings. It is one of the most common reasons families pursue residential care placement.
How can you tell if a person with late-stage dementia is in pain?
Since verbal communication is severely diminished in late-stage dementia, pain is expressed through behavioral cues including moaning, grimacing, sweating, restlessness, and increased agitation. Any sudden change in behavior in late-stage dementia should prompt an evaluation for physical causes of pain such as infections, dental problems, or pressure injuries.
Are behavioral symptoms of dementia treatable?
They are manageable but not curable. Non-pharmacological interventions such as music therapy, exercise, aromatherapy, and reminiscence therapy are recommended as first-line treatments. Medications for agitation, psychosis, and depression are available and addressed in a 2025 clinical practice guideline, but they carry risks including sedation and fall risk and are generally reserved for more severe symptoms.
Do behavioral symptoms affect all types of dementia the same way?
No. In behavioral-variant frontotemporal dementia, for example, personality changes, loss of empathy, and impaired social judgment appear first while memory remains intact. This is the opposite of the typical Alzheimer’s pattern where memory loss precedes major behavioral changes. The type of dementia significantly influences which behaviors appear and when.
