“Every day be brave, be bold and be courageous”

When Dennis was diagnosed with frontotemporal dementia, he didn’t let it stop him from continuing to live life to the full.

We sat down with him for a glimpse into his life before and after his diagnosis. 

When were you diagnosed with dementia?

I was diagnosed with Semantic Frontotemporal Dementia in July 2013 and given three to six years to live. 

I began the journey to a diagnosis about 18 months before that when I first noticed that I didn’t recognise the faces of people I worked with. 

My GP organised many tests before referring me to various specialists for a more thorough diagnosis.

I found this pathway interesting as when my mother was diagnosed it took less than 10 minutes and was very tokenistic. I questioned the validity of the cognitive tests she was given.

Tell us a little bit about your family?

I had been with my wife for about 10 years when I was diagnosed and having a terminal diagnosis has strengthened our relationship in many ways. 

One thing we continue to do is take adventurous road trips on a semi-regular basis. 

Also being invited to speak at several international conferences has led to a few overseas adventures where we had short holidays in Budapest, Kyoto and Singapore, as well as trips across Australia. 

I have two sons from a previous marriage and both of them were studying at universities when I was first diagnosed. 

My youngest son was studying Electrical Engineering at the University of NSW and joined us for afternoon tea literally 30 minutes after I was diagnosed. 

He was visibly shaken when I told him of my diagnosis but soon realised I didn’t match the stereotype of someone living with dementia. 

His older brother was midway through his PhD and I told him my diagnosis over the phone.

My sisters, brothers-in-law, nieces and nephews were all surprised but reassured that I didn’t meet the stereotypes that people were aware of.

Are there other interesting parts of your family story that you’d like to share?

The biggest events in my family have been the marriages of both my stepdaughter and of my oldest son. 

I am now a grandfather, the first time in known family history that three successive generations of males have been alive at the same time.

I now feel the envy of my father who died over 50 years ago and my grandfather who died while my parents where toddlers.

I am looking forward to a future where I can share my life with my grandson.

What did you do for a living?

I began my working career after many years at university. 

As part of my studies of Earth Science I travelled across Australia and got to learn a lot about our country.  

Initially I worked as a teacher in remote western areas as well as the western edge of the Snowy Mountains. 

I then began a career as a petroleum geophysicist working for a large international petroleum exploration company. 

I did much of my training in Houston, Texas and visited NASA’s flight control centre in Houston. 

While there I met Harrison Schmitt – the first scientist astronaut and the second last man to step off the moon (Apollo 17).

I went on to teach IT in private colleges before establishing my own IT support business.

I was an initially an early adopter of new technologies, then an adaptor of new technologies and now an evaluator of new technologies. 

After all, new doesn’t mean better!

Do you have any hobbies or interests? 

Prior to my diagnosis I was planning to develop and expand my hobby of model railways with the construction of a dedicated shed for my model railway. 

Literally the day after my diagnosis my builder rang to say they would commence construction the next day.

I have over 150 metres of laid track and have incorporated a lot of extra features into the layout.  It is an ongoing and challenging process!

Why is it so important to you to use your experience to help raise awareness?

Shortly after my diagnosis I was invited to join Dementia Australia’s Dementia Advocates Program. 

This linked me to several research projects and then I was invited to join the Dementia Friendly Kiama Project.

This has led to meeting many people living with dementia not only locally but also across Australia and the United Kingdom. 

As such, I now know several people who were diagnosed with dementia last century, who are still doing well.

Early in the Kiama project we ran Dementia Awareness workshops to raise community awareness.

We organised our own presentations where I used my background in teaching and my IT skills. These sessions continue today.

I’ve been involved in many research projects, not only as a subject but also in the co-design of projects and the co-authoring of many research papers.

Through my involvement in research and advocacy I was invited to be part of a project called “To Whom I May Concern”, where a group of people living with dementia presented a stage production about our journeys with dementia. 

This was performed with the backing of the Australian Chamber Orchestra to a packed-out house. 

Anything else you would like to say about yourself?

To all those living with dementia:

Every day 
Be Brave
Be Bold 
And Be Courageous
Because you must remember
It’s Not Your Fault!
Live Well and Prosper.

Support and information

Dementia Australia provides support to people of all ages who are impacted by dementia.

You can contact the National Dementia Helpline on 1800 100 500, chat with a Helpline Advisor on webchator email us at helpline@dementia.org.au.

Dennis is a member of the Dementia Australia Dementia Advocates Program. You can find out more about this program on our website.