Weekly Newsletter:

August 5, 2026

Mary is caring for her husband of 50 years, Harry, who was recently diagnosed with Alzheimer's. Slowly, their close relationship has begun to deteriorate as his personality has become suspicious, withholding, and accusatory.

He has begun hiding some of his belongings and accusing her of taking them. His jovial and easygoing personality has morphed into withdrawal, anger, and long fits of silence. Mary tries to reason with Harry, show him more attention, give him the silent treatment, be more affectionate, or give him more space. Nothing seems to break through to reconnect with the familiar Harry. A stranger has slowly invaded their midst, and she has no idea how to cope and adjust to the present reality: the "stranger in her midst."  

Mary agonizes about ways to change Harry, make him understand, see his "faults," make him change back, "get over" this new behavior, and stop being this stranger whom she no longer recognizes. At some point, Mary joins a support group and learns that she is not alone. In a support group for caregivers whose loved ones suffer from cognitive decline, she finds that she can't "fix" Harry, that she did nothing wrong, and that only through a greater understanding of the dementia disease process can she learn to care for him and herself. She shifts from reactive resentment to discovering better ways to cope and provide the best possible environment for both of them, going forward. 

By understanding some of the myths surrounding dementia behavioral changes, caregivers can better implement strategies and adjustments that significantly alleviate the pain and suffering for everyone involved.

THE MYTH OF BEHAVIORAL SYMPTOMS IN DEMENTIA

 A common but harmful myth is that behavioral changes in dementia are simply a person's "character flaw" or a sign of being "difficult." In reality, these behaviors are direct results of brain damage caused by underlying neurological disease.

Why the myth persists:

Caregivers and families often interpret sudden aggression, withdrawal, suspicion, or agitation as personality changes or deliberate misbehavior. This is especially true when the person was previously calm or well-liked. However, the brain's damage disrupts the ability to process safety cues, recognize emotions, or communicate needs.

Consequently, the person may lash out, withdraw, or become suspicious not because they are "bad," but because their brain is struggling to cope. For example, a gentle man may suddenly become aggressive when touched during morning care because his brain no longer recognizes the touch as safe. 

Caregivers and families often misunderstand behavioral symptoms, interpreting them as being "difficult" or simply contrary, when they are actually direct expressions of damage to certain portions of the brain. When a person with dementia becomes aggressive, accusatory, or unusually suspicious, loved ones may assume they are being difficult or reverting to old personality traits that were always there. In reality these behaviors are the brain's way of communicating distress, fear, confusion, pain, or loss of cognitive function in ways the person can no longer verbally express. 

There is a sense of a loss of control over the environment or a misperception of environmental cues.

Why it's misunderstood:

• Unpredictable Onset: Behavioral symptoms don't always follow the expected pattern of memory loss. Some people with mild memory issues develop severe agitation, while others with advanced cognitive decline exhibit few reactive challenges.
• No clear external cause: Families may blame medication changes, poor caregiving, or the care environment rather than recognizing behavior as part of the disease process itself.
• Communication barrier: The person can no longer express distress verbally, so the brain uses behaviors to signal fear, confusion, pain, or loss of control.

The Reality:

Behavioral symptoms arise from specific damage to brain regions that control impulse control, emotional regulation, and the interpretation of sensory information. When the frontal lobe atrophies or accumulates amyloid plaques, the person loses the neural circuits that normally inhibit aggressive responses or filter intrusive thoughts. The limbic system, which processes emotion, becomes hyperactive in some forms of dementia, causing exaggerated emotional reactions to minor frustrations. The temporal lobe, critical for memory and emotional context, deteriorates in frontotemporal dementia, directly triggering personality changes and socially inappropriate behavior, for example.

This is not a psychological choice; it's cellular destruction reshaping how the brain functions. A woman whose brain shows significant atrophy in the amygdala might experience intense fear or rage at sensory triggers that previously wouldn't have bothered her, simply because her brain can no longer modulate that emotional response. The brain is literally broken in ways that change how one perceives, feels, and responds to the world. 

When families understand this, the entire frame shifts from "Why is she being mean to me?" to "What is the brain trying to tell us about her distress?" Caregivers who operate from the first frame tend to withdraw emotionally or respond punitively. Those operating from the second frame look for the underlying cause—pain, infection, medication side effects, sensory overload, or loss of familiar routine—and address the root cause rather than the behavior itself.

• Not all dementia causes the same behaviors: some people with dementia remain calm while others develop severe aggression or paranoia
• Behaviors are symptoms, not personality: They reflect unmet needs such as safety, comfort, or familiarity rather than a person's true nature
• Early recognition is key: Many behavioral problems go unaddressed for months or years because they are misattributed to other causes
• The Impact of Misattribution: When caregivers respond with frustration or punishment instead of compassion and problem-solving, the distress escalates. This can worsen the person's quality of life and make the behavior harder to manage for both the caregiver and the care receiver. Reaction has trumped response, creating a true lose-lose situation.

Bottom Line: Behavioral symptoms in dementia are not a sign of poor character or willfulness. They are the brain's way of communicating distress, necessitating a shift in caregiving from reaction to compassion. From reactive to proactive.

The misunderstanding runs deeper because behavioral symptoms don't always follow the linear decline of other dementia signs. Unlike memory loss, which families expect, behavioral changes arrive unpredictably and often seem disconnected from the illness itself. Some people with advanced cognitive decline remain emotionally calm while others with mild memory problems develop severe aggression or paranoia. This inconsistency leads families to blame external causes—a medication change, poor caregiving, or the care facility—rather than recognizing behavior as an integral part of neurological disease. Dementia specialists report that the majority of behavioral problems they encounter have gone unaddressed for months or years precisely because family members and primary care doctors didn't recognize them as dementia symptoms at all.

Caregivers confronting behavioral issues while caring for loved ones can best adopt a helpful, investigative approach by inventorying possible unmet needs.

Are they:

1. Hungry
2. Over tired
3. Need toileting
4. In pain
5. Bored
6. Overstimulated
7. Have a UTI
8. Reacting to noise
9. A break in the regular routine
10. Medication reaction/change

In addition to implementing the checklist, distraction can be a powerful tool. Scientists tell us that we can't think two thoughts simultaneously; often, shifting attention to a new distraction can break the cycle of the previous problematic focus or stimulus.

By adopting an attitude of curiosity and problem-solving, rather than reacting with annoyance or prejudgment, the outcome can prove rewarding for both parties involved, with the potential for becoming a source for a more harmonious relationship. And who doesn't want to become a clever and oh-so-savvy detective on BritBox??

— Karen Kelleher, M.A.

Family Caregiver Support Coordinator at DayBreak

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