The subtle signs I had dementia at 57: Catherine Daskalakis

Tracing back my earlier symptoms, I felt anxious making phone calls and going to the shops – normal things I have done on a daily basis for years.

At 57, I was a proud mother of three children – who had all grown into wonderful adults in their 20s.

I was working as a kindergarten teacher.

Teaching was my lifelong passion, a career I had extended across my time living in Australia and Singapore over many years.

I had been driving confidently for as long as I can remember.

So, when I was in a car accident driving home from work in Sydney that I still can’t fully recall, I knew something was wrong.

My family prompted me to follow it up and see a specialist.

Not in my wildest dreams did I think I had Alzheimer’s disease.

I was shocked to receive a diagnosis on younger onset dementia in my late 50s.

I felt like I was losing who I was, my routines and my life as I knew it.

I didn’t know this happened to people at my age, and didn’t know anybody going through it.

I realise now there is an evident lack of awareness around younger onset dementia, which is any form of dementia in people under the age of 65.

Catherine Daskalakis with her daughter Victoria.

It is currently estimated that there are almost 29,000 Australians living with younger onset dementia, just like me.

It’s a number that is expected to rise to almost 41,000 people by 2054.

Tracing back my earlier symptoms, I realised I would often rely on my family to find my words. I would ask my husband to remind me “what was that again?” often.

I felt anxious making phone calls and going to the shops – normal things I have done on a daily basis for years.

I had never experienced these feelings before.

I lost interest in cooking, something I have loved my whole life.

I have learnt how anxiety can affect people living with dementia, just like it can affect any of us.

These feelings of fear, unease or agitation can increase if they are not addressed.

Before my diagnosis, working as a teacher, I loved seeing my students gain independence as they grew more curious and capable.

I didn’t want to lose my own independence, but I knew I needed to accept help.

My husband Steven and I accessed support services from Dementia Australia.

We met a wonderful counsellor who helped us every step of the way, talking through everything I was feeling. It helped me feel less alone and understand how I could live with my diagnosis.

I want to learn to live with dementia as well as possible, with the support of family, friends and experts in the field.

Now, I am a proud Dementia Australia Dementia Advocate, alongside many other people living with dementia or caring for their loved ones.

As I lifelong teacher, it felt right to reach as many people as I could with education about dementia.

I am passionate about reaching the general public or to someone who is in my shoes at the beginning of their dementia diagnosis journey.

Since becoming an advocate, I have been involved in collaborative projects from filming, fundraising, consultation, media interviews and most recently I was involved in Dementia Australia’s first podcast Hold the Moment.

It has taken me a long time to understand my diagnosis, to deal with it and tell myself that this is now my life, so I am determined to make the most of it.

If I can give just one person hope, I have done my job.

If this story has prompted any questions or concerns, please call the National Dementia Helpline 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au.

Originally published as The subtle signs I had dementia at 57: Catherine Daskalakis