Living with Alzheimer’s, David is helping change dementia

Since his Alzheimer’s disease diagnosis, Dr David Williams AM’s living experience has taken him from a Wollongong rock pool to Parliament House. Along the way, he’s helping change dementia.

Speaking to parliamentarians and GPs at a Parliamentary Friends of Dementia event in Canberra, David summed up what drives him with an old saying.

“It’s not what you are known as, but what you’re known for,” he said. “I might be known as the guy with Alzheimer’s, but I would like to be known as someone who contributed to its remedy.”

“Doing things a little bit differently”

Most mornings, David is in a Wollongong rock pool by 4:30am, swimming laps before the regulars arrive. Then, if the sky cooperates, out comes the camera.

When he meets a parent with a young child, he finds a photo of the first sunrise of that child’s life and gives it to them.

It’s typical of David, who was made a Member of the Order of Australia in 2013 for his contribution to the Illawarra.  

“Doing things a little bit differently is what I always like to do,” he said. “I’ve got this thing called Alzheimer’s. I’d like to do something with it.”

“I’m always really keen to get into it”

When he was diagnosed in 2023, David first kept the news within his family. That didn’t last long.

“If I’ve got something, I’m always really keen to get into it,” he said. “So I decided, well, I’m going to tell people.”

Plenty of people were shocked. For David, it was simple.

“If you’ve got it, you’ve got it,” he said. “Get on with it.”

Being open about his diagnosis is one way David challenges the stigma that can stop people talking about dementia or seeking support.

It also meant pushing for the right support after the first specialist he saw offered little help. David recalled. “I needed more than that.”

His GP referred him to a second specialist, who helped him understand more about dementia. Looking after his brain health, including those early swims, is now a priority.

“Brain health activity is just so darn important,” he said.

Changing dementia through living experience

At the event, David was asked what had helped him most after his diagnosis. He didn’t hesitate.

“Dementia Australia,” he said. “I sought Dementia Australia out myself.”

He joined the Dementia Advocates Program, where people with living experience help shape policy, programs, services and research.

“The support, input and value that I got from becoming an Advocate with Dementia Australia has just been absolutely outstanding,” he said.

It has taken him to places he never expected, from Broken Hill and Batemans Bay to Parliament House. Each time he shares his story, he shows others living with dementia that they are not alone.

David is now a member of the Dementia Australia Advisory Committee. Made up of people living with dementia or mild cognitive impairment, the committee gives strategic advice on dementia services, programs, policy and advocacy. He also sits on the Dementia Australia Research Foundation Scientific Panel.

Closer to home, he’s working to make Wollongong a more dementia-friendly community.

His advice to anyone who has been diagnosed is to get involved and start small.

“Start with something as small as putting your toe in the water,” he said. “And then your ankle and then your leg.”

Help change dementia

Like David, you can use your living experience to help change dementia. Find out more about becoming a Dementia Advocate, or discover how you can help make your community more dementia-friendly.

You can also hear more from David on Hold the Moment, Dementia Australia’s podcast.

Looking for support?

No one should face dementia alone. Contact the National Dementia Helpline on 1800 100 500 or via live chat, 24 hours a day, seven days a week.

Share your story and help build a brighter tomorrow.

Dementia, Australia. We’re changing it.