When Dementia Arrives Before 65: One Family’s Journey Through Young Onset Dementia

When most people hear the word dementia, they picture someone much older. But dementia can affect people before the age of 65, and when it does, it is known as young onset dementia.

For one Australian family, the first signs did not immediately look like dementia. They appeared gradually through anxiety, changes in behaviour, difficulty communicating and ordinary everyday tasks suddenly becoming confusing.

The family shared their experience with The Good Years Club because they found very little information or understanding about young onset dementia when their own journey began. Their hope is that telling their story might make another family feel a little less alone.

To protect everyone involved, names, workplaces, locations, organisations and other identifying details have been removed or changed.

Life Before Young Onset Dementia

Before dementia entered their lives, the husband at the centre of this story was a hardworking and social man who had spent much of his life in physically demanding jobs. He loved sport, enjoyed good food and was deeply devoted to his family.

Cooking was a particularly important part of life at home. He was largely self-taught in the kitchen, and he and his wife would spend time planning what they were going to eat each week.

That was why some of the earliest changes stood out.

His meals began to stop making sense. Instead of putting together the meals he had cooked for years, he might serve only meat or only vegetables. At first, his wife wondered whether stress from other things happening in their lives could explain it.

Then one day, while they were preparing food together, she asked him to get some ordinary vegetables from the fridge.

He could not recognise them.

The same thing began happening with basic kitchen utensils. His speech was changing too. Sometimes he would mix up his words. At other times he would barely speak at all.

His wife knew the man she had spent decades with, and she knew something was wrong.

Searching for an Answer

The family sought medical help and anxiety was initially considered as a possible explanation. Medication was prescribed and specialist appointments followed.

But his wife was increasingly convinced that anxiety could not explain everything she was seeing.

After decades together, she knew what her husband’s anxiety looked like. This was different.

The changes continued, and medication did not provide the answers the family desperately wanted. Following one medication change, his wife returned home to find him outside inadequately dressed during extremely hot weather and noticeably confused. He had also developed a significant reaction to the medication, leading the family to seek further medical advice.

His wife began doing her own research. Again and again, what she was reading seemed to point towards dementia.

It was a frightening possibility, but by this stage she was more frightened by not knowing what was happening.

Then came an incident that made it impossible for the family to continue as though life was normal.

The Missing Car

One day the family returned home and noticed something strange. Their car was not where it should have been.

Her husband was sitting comfortably inside the house. The television was on and the car keys were there, but the car itself was gone.

Eventually they found it safely parked at some nearby shops.

Thankfully, nobody had been hurt. But the incident changed things for the family.

Their adult son removed his father’s car keys, and within days the family was back seeking urgent medical help. They did not feel they could simply wait months for another appointment while his condition continued to change.

A specialist mental health team eventually came to the family home to assess him.

During that assessment, he struggled to recognise someone he had known for many years. Further assessment in hospital was recommended.

Leaving him there was incredibly difficult, but it ultimately gave the family the answer they had spent so long searching for.

He was diagnosed with young onset dementia.

A Son, His Dad and a Hug

The diagnosis did not make what followed easy.

He remained in hospital for an extended period while his family visited constantly and began trying to understand what life would now look like.

After one visit, his adult son said something to his mother that she has never forgotten.

He told her that he had never really been someone who hugged people. But now, every time he visited his dad, he hugged him when he arrived and hugged him again before he left.

It changed the way his mother thought about physical affection.

Dementia could change her husband’s speech, memory, behaviour and independence, but it did not remove his need for connection. From then on, she made a conscious effort to maintain that affection even on the hardest days.

It was one of many lessons the family would learn along the way.

Realising He Could Not Come Home

Eventually, the family had to confront another painful reality.

Returning home permanently was no longer going to be the safest option.

They began navigating disability support, respite care and Supported Independent Living, often referred to as SIL. Like many families suddenly thrown into the care system, they had to learn an enormous amount very quickly.

His first respite placement was difficult.

His wife felt there was little routine, something she had already realised was becoming increasingly important for him. Personal care could also become challenging.

For example, if somebody simply asked him, “Would you like a shower?”, he would usually say no.

His wife had learned that the way something was communicated could make an enormous difference. Rather than turning every task into a decision, she would calmly explain what they were going to do, guide him through it one step at a time and talk about something enjoyable they could do afterwards.

It was not about ignoring his wishes. It was about understanding that dementia had changed the way he processed questions, choices and everyday routines.

When the First Home Was Not the Right Home

Eventually the family found a Supported Independent Living home.

It provided accommodation, meals and support, but over time his wife became increasingly concerned that the environment was not the right fit for someone living with young onset dementia.

She felt that staff did not always understand the difference between supporting someone who had lived independently for decades and was now losing cognitive abilities through dementia, and supporting someone who had lived with a lifelong cognitive disability.

Personal care remained difficult. His wife frequently found herself visiting to help him shower, clean his teeth and complete other everyday tasks.

She would quietly talk him through each step. She tried not to rush him, kept the conversation calm and usually gave him something pleasant to look forward to when they were finished.

There were good people involved in his care, and eventually some staff undertook additional dementia education. But another problem remained: consistency.

Different staff members used different approaches. Workers changed frequently. Routines changed depending on who was on shift.

His wife increasingly believed that consistency was one of the things her husband needed most.

The Bag That Went Everywhere

As his dementia progressed, his wife began carrying a special bag whenever she visited.

Inside were snacks, drinks, books, fidget items and anything else she thought might comfort or distract him.

She needed it more often than she would have liked.

There were times when staff would contact her because her husband had become extremely agitated. She would leave what she was doing and go to him, sometimes finding that within 10 or 15 minutes of her arrival he had begun to settle.

For a long time, she wondered what exactly she was doing differently.

Eventually she realised there probably was not one magic technique.

She treated him like the person she had always known.

She would greet him normally, find somewhere quiet where he did not feel watched or crowded and ask whether she could ask him a few questions.

The questions were simple.

Was he hungry? Was he thirsty? Was something hurting? Was he angry, sad or confused?

If he was hungry, the food was already in the bag. If he was thirsty, she had a drink ready. If something hurt, she could slowly work through different parts of his body to try to understand where the pain was coming from.

And once he had settled, she tried to move forward.

She did not see much value in repeatedly explaining that he had done something wrong if he could no longer understand or remember what had happened. For him, revisiting the incident could simply create another upsetting experience.

When Things Became Harder

As the dementia progressed, periods of agitation became more frequent and difficult for those supporting him.

Eventually there were further hospital admissions.

During one particularly difficult episode, he spent hours pacing around an emergency department. His family stayed with him because familiar faces and voices seemed to provide reassurance when almost everything else around him was unfamiliar.

It was exhausting and frightening.

But his wife also began seeing his behaviour differently.

She increasingly understood agitation as a possible form of communication.

Perhaps he was frightened. Perhaps he was in pain. Perhaps he was hungry, thirsty, tired or overwhelmed. Perhaps there were too many people around him. Perhaps his routine had unexpectedly changed.

Sometimes she could work out the reason.

Sometimes she understood it only afterwards.

And sometimes there simply was not an answer.

The important change was that she stopped viewing the behaviour simply as her husband being “difficult”. She started asking what the behaviour might be telling them.

Searching Again for the Right Support

After further hospital admissions and increasing difficulties with his living arrangement, his wife began searching again.

She wanted somewhere that would understand the person her husband had been before dementia, not just the behaviours he now displayed because of it.

Eventually the family connected with people who approached his care differently.

They spent time learning about him.

They learned that he had spent his working life doing physical jobs. They learned that he loved watching sport. They knew he enjoyed good food and, perhaps most importantly, that he had always been someone who thrived on routine.

Those pieces of his old life became part of his new one.

His days became more predictable. Meals were filling and familiar. Watching sport remained something he could enjoy. Personal care became part of an established routine rather than a new negotiation every day.

Even his pacing was incorporated into his day rather than constantly being treated as a behaviour that needed to be stopped.

At the end of the day, staff could tell him that the day’s “work” was finished and it was time to sit down and relax.

It made sense to him.

And gradually, his family noticed a difference.

He seemed happier and more relaxed. Difficult moments did not disappear, but the environment around him finally seemed to work with his dementia rather than constantly against it.

Becoming His Wife Again

Finding the right support also changed life for his wife.

For years, so much of their relationship had revolved around caring. She had been the person called when something went wrong, the person managing appointments, the person helping with personal care and the person constantly trying to work out what he needed.

With appropriate support around him, she could begin visiting him as his wife again.

Their son could visit his dad and watch sport with him rather than spending every visit worrying about whether both of his parents were coping.

For their family, accepting outside care did not mean abandoning someone they loved.

Eventually, the right care allowed them to recover parts of their relationship that dementia had pushed aside.

What Their Journey Has Taught Them

There is no single experience of young onset dementia. Every person and every family will face their own challenges, and what worked for this family will not necessarily work for everybody.

But after years of living alongside dementia, there are things this family wishes more people understood.

When somebody you have known for decades begins behaving fundamentally differently, it is reasonable to keep asking questions. When communication becomes difficult, simple language can help. Routine and familiar faces can provide reassurance. Behaviour may sometimes be the only way a person can communicate that something is wrong.

And the person living with dementia is still a person.

They may lose words, abilities and memories. They may need increasing levels of support. Their behaviour may sometimes become incredibly difficult for the people around them to understand.

But their history, relationships, preferences and need for dignity do not suddenly disappear.

Today, this family says they are in a better place than they have been for several years.

Dementia remains part of their lives.

But so do sport, familiar routines, family visits, laughter, good food and the relationship between a husband, his wife and their son.

And after everything they have been through, those things matter enormously.

This story was shared with The Good Years Club by an Australian family affected by young onset dementia. Names, ages, locations, workplaces, organisations, service providers and some identifying details have been removed or generalised to protect the privacy of everyone involved. The family’s experience is their own and should not be considered medical advice.