ID: Picture of two men on a motorbike.

At My Ability Pathway, our Support Coordination team often talks about goals, plans and progress. But sometimes, the most powerful outcomes aren’t written in a plan – they’re felt in the wind on your face, the sound of an engine starting, and the spark of recognition in someone’s eyes.

Today, 5 March 2026, we saw exactly that with John, one of MAP’s Support Coordination clients.

Understanding Frontal Lobe Dementia

John lives with Frontal Lobe Dementia, also known as Frontotemporal Dementia (FTD). FTD is a progressive neurodegenerative disease that causes shrinkage (atrophy) in the brain’s frontal and temporal lobes. It most commonly affects people between the ages of 45 and 65.

Unlike other forms of dementia that begin with memory loss, FTD often first presents as dramatic changes in personality, behaviour and language.

Common impacts include:

  • Socially inappropriate or impulsive behaviour
  • Apathy or loss of motivation
  • Reduced empathy
  • Difficulty finding words or changes in speech
  • In some cases, motor or movement changes

There are two main subtypes:

  • Behavioural-variant FTD (bvFTD), which affects personality, impulse control and social conduct
  • Primary Progressive Aphasia (PPA), which primarily affects language

FTD is caused by abnormal protein build-up in the brain. In around 30–40% of cases, there is a genetic link. There is currently no cure, and diagnosis relies on neurological assessments, behavioural evaluations and brain imaging that shows atrophy.

In recent years, public awareness of FTD has increased following the diagnosis of actor Bruce Willis, helping many families better understand the condition and its impact.

While life expectancy varies widely, supportive care, routine, therapies and medication can help manage symptoms such as agitation, depression and sleep changes.

But beyond the clinical description is something equally important: identity. And that’s where John’s story comes in.

When the Things You Love Slip Away

For many people living with FTD, it’s not only abilities that change – it’s interests and motivation too. Activities that once brought joy can feel distant, confusing or overwhelming.

John used to ride motorcycles. It wasn’t just a hobby; it was part of who he was.

As dementia progressed, riding became difficult. John shared that it wasn’t only about forgetting how to ride – it was about losing confidence. People would tell him he was doing it wrong. His balance worried him. Gradually, the bikes stopped.

And with that, something else quietened too.

His wife Terri has watched these changes unfold. Over the years, John has shown less interest in many of the things that once energised him. So when something sparks engagement, it matters.

A Plan to Reignite a Passion

After talking with John, Support Coordinator Beth started thinking differently. What if this wasn’t about what John could no longer do – but about how we could safely reconnect him with what he loved?

Beth reached out to Keith from the Long Riders Motorcycle Club Adelaide. Without hesitation, Keith offered to come to John’s home and spend time talking bikes.

That visit alone made a difference.

They sat together – John, Terri and Keith – swapping stories. They talked about John’s first bike, a Suzuki. They reminisced about runs, rides and the open road.

John worried about his balance. Keith reassured him.

And then John’s humour surfaced:
“I’ve got some bungee straps out the back if you need to strap me down.”

The room filled with laughter.

It was a glimpse of the John Terri knows so well.

“Nervous. It’s Been a Long Time.”

Soon enough, they stepped outside to Keith’s bike.

John was asked, “How are you feeling?”

“Nervous. It’s been a long time.”

The first ride was just around the block – a gentle reintroduction to the sensation. A quick stop back home. A moment to regroup.

Then they headed out for a longer ride around town.

This was something different for Terri. John rarely leaves the house without her now, which makes us acutely aware of the pressures carried by carers – the constant responsibility, the fatigue, the hypervigilance, the quiet mental load. Moments like this highlight an important question in disability and dementia support: who’s caring for the carer?

Creating space for John to safely reconnect with something meaningful also created space – even briefly – for Terri to breathe.

More Than a Ride

There is no cure for Frontal Lobe Dementia. We cannot stop the progression.

But we can support identity.
We can create moments of connection.
We can work creatively around challenges.

Today wasn’t about motorcycles alone. It was about dignity. Confidence. Laughter. Community.

It was about remembering that even when the brain changes, the person is still there.

At MAP, Support Coordination is not just about navigating systems – it’s about listening deeply enough to ask: What still matters?

For John, it turns out, it’s still the rumble of a bike beneath him and the freedom of the road ahead.