When Dementia Behaviour Changes: What One Family Learned About Agitation and Aggression

One of the hardest things for families dealing with dementia can be seeing someone they love begin behaving in ways that seem completely out of character.

A calm person may begin yelling. Someone who was always easygoing may become frustrated or frightened. A person may resist showering, pace continuously, push people away or suddenly become distressed in an environment they previously enjoyed.

For one Australian woman supporting her husband through young onset dementia, learning how to respond to these moments took years.

There was no single technique that fixed everything. In fact, one of the biggest lessons she learned was accepting that sometimes there was no immediate solution.

But over time, she began to recognise patterns. She learned what tended to calm her husband, what could make things worse and how seemingly difficult behaviour could sometimes be the only way he had left to communicate that something was wrong.

The family shared their experiences with The Good Years Club in the hope that something they learned might help another family facing the same situation.

Names and identifying details have been removed.

“There Is Usually a Reason”

As her husband’s dementia progressed, his ability to explain what he needed gradually declined.

That meant his behaviour became increasingly important.

If he was pacing, was he simply pacing because of dementia, or was he uncomfortable?

If he became angry, was he angry with the person standing in front of him, or was he frightened by what was happening around him?

If he refused personal care, was he being deliberately difficult, or did he not understand what was being asked?

His wife learned to start with the simplest possibilities.

Was he hungry? Thirsty? Tired? Too hot? Too cold? Did something hurt? Was the television too loud? Were there too many people around him?

Sometimes the answer was surprisingly simple.

Other times, she never found an answer at all.

But asking the question changed how she responded.

Instead of immediately thinking, “How do I stop this behaviour?”, she began thinking, “What might he be trying to tell me?”

Learning to Slow Everything Down

When her husband was already distressed, complicated conversations rarely helped.

His wife began using short, simple questions that could be answered with a yes or no.

“Are you hungry?”

“Are you thirsty?”

“Are you hurting?”

If he indicated that something hurt, she could slowly work through different parts of his body and try to identify where the discomfort was.

She also learned not to overwhelm him with choices. If she thought he might be hungry, rather than asking him to choose between several meals, she could have something familiar ready.

The less he had to process in a difficult moment, the easier communication sometimes became.

Why She Started Carrying a Special Bag

As difficult moments became more common, his wife began carrying a bag whenever she went to see him.

It contained snacks, drinks, books, fidget items and other familiar things that might help.

There was nothing particularly sophisticated about it. The bag simply meant that if her husband was hungry, thirsty, restless or needed distraction, she already had options available.

There were times when she would receive a call saying he was extremely agitated. She would arrive, take him somewhere quieter and begin working through the possibilities.

Sometimes, within 10 or 15 minutes, he would settle.

She could not always explain exactly why.

Perhaps it was the food. Perhaps it was leaving a noisy room. Perhaps it was hearing a familiar voice.

Or perhaps it was simply knowing that the person beside him was someone he trusted.

Sometimes Space Was Better Than Intervention

One thing her husband particularly disliked was feeling watched or followed.

His wife understood that.

When he became distressed, surrounding him with more people or repeatedly questioning him could make an already overwhelming situation even harder.

Instead, she tried to find somewhere quiet.

Busy environments could be particularly challenging. Noise, bright lights, crowds and multiple conversations could all add to the confusion.

She learned that sometimes the best thing she could do was reduce what was happening around him.

She would speak quietly. Sometimes she would hum or sing something repetitive, partly because it seemed to help him and partly because it helped her stay calm.

The goal was never to win an argument.

It was to make the situation feel safe again.

Personal Care Became a Lesson in Communication

Showering became one of the recurring challenges.

If somebody asked her husband, “Do you want a shower?”, he would almost always say no.

For staff, it could appear that he had simply made a choice.

His wife saw something more complicated.

She knew that dementia had affected his ability to understand decisions, sequences and why certain everyday tasks needed to happen.

Her approach was different. She would calmly explain that it was time to shower, talk him through each step and give him something pleasant to look forward to afterwards.

That did not mean ignoring his distress. If a situation became unsafe or overwhelming, safety came first.

But she found that routine, calm communication and predictability worked much better than turning the same everyday task into a completely new decision each morning.

Later, when her husband moved into a more suitable supported living environment, staff incorporated personal care into a consistent daily routine.

It became part of what happened each day rather than something unexpected.

Familiarity Mattered More Than She Expected

Staff consistency became another major lesson.

During earlier stages of her husband’s supported care, there could be frequent changes in the people around him and in the way different workers approached him.

His wife noticed how much this mattered.

Some people could interact with him without difficulty. Around others, he could become visibly uncomfortable or agitated.

She learned to pay attention to those patterns.

Did his behaviour change when a particular person entered the room? Did he settle when that person stopped talking or stepped away? Was somebody approaching him too quickly? Was he being touched without warning?

A person living with dementia may not be able to explain, “This person makes me uncomfortable.”

Sometimes their behaviour may be the clue.

She Stopped Trying to Revisit Every Incident

Another lesson was knowing when to move on.

After her husband had calmed down, his wife generally did not see value in repeatedly discussing what he had done during the period of agitation.

If he could not properly remember or understand the incident, explaining it again could simply make him upset about something that, to him, felt as though it was happening for the first time.

Instead, she often redirected him towards something else.

A snack. A drink. A book. Sport on television. A story. Something familiar.

Sometimes even being deliberately silly could break the tension.

She was not trying to pretend nothing had happened. She was recognising that correcting someone is not always the same thing as helping them.

When Nothing Works

Perhaps the hardest lesson was accepting that sometimes she could not fix what was happening.

There were days when her husband remained distressed despite everything she tried.

There were also situations where behaviour became unsafe and additional help was needed.

Her advice to other carers is not to view asking for help as failure.

There is no benefit in a family member or carer becoming injured while trying to manage an unsafe situation alone. Sometimes creating distance is necessary. Sometimes another person needs to step in. In an emergency, professional assistance may be required.

Caring for somebody with dementia does not mean you have to be capable of handling every situation yourself.

What Changed When the Environment Changed

Eventually her husband moved into a supported living environment where his family felt staff took the time to understand who he was.

They learned about the man before the dementia.

He had spent much of his life doing physical work. He loved sport. He enjoyed good food. He had always liked routine.

Instead of expecting him to fit into an entirely new system, those caring for him began building parts of his old life into his new routine.

Meals became predictable. Sport remained part of his day. Personal care followed a routine. Staff became familiar with how he communicated.

Even his pacing was treated differently.

Rather than constantly trying to stop it, it could simply become part of his day. Later, he could be told that the day’s “work” was finished and it was time to sit down and relax.

For him, that made sense.

His family noticed that he became calmer and more settled.

There were still difficult moments. Dementia did not disappear because the environment improved.

But the right environment reduced some of the battles that had previously dominated everyday life.

Looking Beyond the Behaviour

After years of caring for her husband, his wife does not claim to have all the answers.

Quite the opposite.

She says dementia has a way of presenting a new challenge just when you think you have understood the last one.

But if there is one idea she hopes other families remember, it is that behaviour does not happen in a vacuum.

A person who is yelling may be frightened.

Someone pacing may be uncomfortable.

A person refusing care may not understand what is happening.

Someone pushing another person away may desperately need space.

There will be times when the reason becomes obvious. There will be times when you realise it only afterwards. And there may be times when you never understand it.

The goal is not to become perfect at managing dementia.

It is to continue seeing the person behind it.

For this family, finding people who understood that principle changed their lives.

Her husband now has support from people who know his routines and individual needs. Their adult son can visit his dad and enjoy spending time with him. And his wife can increasingly be exactly that again: his wife, rather than carrying every responsibility as his full-time carer.

After several incredibly difficult years, that has meant more to their family than they can easily put into words.

This article is based on the lived experience of an Australian family affected by young onset dementia. What worked for this family may not be appropriate for every person or situation. Names, locations, workplaces, organisations, support providers and identifying details have been removed or generalised to protect everyone involved. Seek appropriate health or emergency assistance where there are concerns about a person’s health or immediate safety.