Amy McKay

Dementia isn’t just a disease I know about. It is a disease that has woven itself through generations of my family.

When I was in primary school, my mum, my sister and I lived with my nan and pop. At the time, my pop was living with what we believed was Alzheimer’s disease. In more recent years, I discovered that his mother had also experienced the same disease.

Then, at around 55, my mum began developing similar symptoms.

I became her primary carer, and in 2020, at just 66 years old, dementia took my mum from me. Caring for her was incredibly difficult at times, but the years I spent beside her are years I will never regret, and time with her that I will never forget.

I hoped that would be the end of our family’s experience with dementia.

It wasn’t.

In 2023, my sister came to live with me. I began noticing changes in her behaviour, but because of her age and personal circumstances, dementia simply wasn’t where my mind went.

Then, during a family holiday in 2024, it became undeniable that something was wrong.

She was only 44.

When we returned home, I went into autopilot. There were appointments, doctors and specialists, and eventually my sister received a diagnosis of early-onset Alzheimer’s disease.

But something still didn’t sit right with me.

So I kept searching for answers.

A further specialist assessment and extensive genetic testing undertaken ultimately identified a genetic mutation known as C9ORF72. At just 45 years old, my sister was diagnosed with the behavioural variant of frontotemporal dementia (FTD).

Looking back at our family history, suddenly so many pieces seemed to fit differently.

Then came another reality I had to face.

I had a 50/50 chance of carrying the same genetic mutation.

As the mum of a six year old and a nine year old, I needed to know.

Deciding to undergo genetic testing was incredibly difficult. I knew that the result could fundamentally change how I saw my own future and that of my children.

My result was negative.

There are very few words that adequately describe what that moment meant to me. Honestly, it felt better than winning the lottery.

And perhaps most importantly for me as a mum, it meant that my children could not inherit this particular genetic mutation from me.

But my negative result doesn’t change what dementia has taken from my family, or what my sister and our family continue to face.

So why am I doing this?

I’m doing it to raise awareness that dementia is not simply a disease of old age. It can affect people much younger than many of us ever imagine.

I want people to feel empowered to ask questions when something doesn’t seem right and to advocate for the people they love.

I’m doing it because sometimes the first diagnosis isn’t the end of the story.

I’m doing it because knowledge is power, and the answers we eventually found changed our understanding of what had been happening in our family for generations.

Most importantly, I’m doing it for greater awareness, better understanding and hope for every family that finds themselves on this journey.

Every 5km is for my pop, for my mum and for my sister.

But more importantly I am doing it for my kids.

And for every family whose lives have been changed by dementia.

This is my why.