“I’ve been diagnosed with younger onset dementia – what do I do now?”

When former police detective Peter was diagnosed with younger onset dementia just before his 65th birthday, he didn't know anyone else his age with the disease.

A year earlier, he had voiced his concerns to a GP about forgetting things and having a few cognitive issues.

“I would get halfway through a sentence and then forget the next word I wanted to say,” Peter (pictured above with his wife Denise and grandchild) said.

He was told this was nothing to worry about, that he was just getting older.

The next year, after an MRI confirmed Peter’s younger onset dementia diagnosis, he began figuring out his next steps.

“I’ve always been someone who would find out what is going on and then deal with it - not to hide away,” he said.

Younger onset dementia is any form of dementia diagnosed in someone younger than 65.

Next steps

Peter was eager to see how he could live as well as possible with his diagnosis and is now involved in a clinical trial on ‘Efficacy and Safety in patients with early Alzheimer’s Disease’ with St Vincent’s Hospital in Sydney.

He and his wife also attended one of Dementia Australia courses in their local area.

The course gave them a better understanding of the diagnosis, the changes they may experience and the support available.

“That would be the first thing I would recommend to someone recently diagnosed,” Peter said.

He also recommended doing things that keep you fulfilled, such as exercise and socialising, which is why playing golf with his friends is so important to him.

Often when living with younger onset dementia, your experience can seem worlds away from the lives of your friends.

Sharing the Hold the Moment podcast with his golfing friends was one of the ways in which Peter helped them to understand his condition.

Years on from his diagnosis, he is passionate about living as well as he can and raising awareness of dementia.

Peter is an active Dementia Australia Dementia Advocate, a member of the Northern Beaches Dementia Alliance, volunteer at Memory Walk & Jog events and a Peer Leader – connecting with others with a similar experience with dementia.

“If something doesn’t feel right, get it checked out,” he said.

Find out more

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

Our services are available to individuals, couples, families and groups, aged care and community care professionals.

Contact the National Dementia Helpline on 1800 100 500 to speak with someone about your situation.

For more information and support visit the younger onset dementia hub on our website.