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‘He’s here but he’s not here’: Family struggles with dad’s early-onset dementia

Teenage siblings Samantha, Christopher and Brianna say it was the small things they noticed in their dad’s behavior that signaled a change.

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“The first time I really noticed it I was shopping with dad and we were looking for kitty litter and kitty litter was nowhere near where dad was looking,” Samantha says. “He was looking in the ice-cream aisle.”

“I felt like I had to take control; it was reversed roles.”

Their mum Melissa also remembers when she realised something was wrong.

“The first sign of anything was when we got a letter saying that Paul had to go to a meeting because of something that had happened at work,” she says.

Paul is a carpenter by trade and his boss had noticed him breaching safety rules around dangerous tools.

After he sought medical help, Paul was diagnosed with early-onset dementia at 53 years old.

The news came as a shock to the family, who were suddenly plummeted into the isolating and ominous world of a disease that typically affects older people.

“I thought ‘There’s been a mistake’,” Paul says of his diagnosis. “‘I’m not 70, 75’.”

‘A lonely journey’

Paul McMellon has worked as a carpenter for 30 years and says has always been good with his hands. His father and brother are carpenters too.

But after he began to act strangely on the job – “There were a lot of things that I was doing that were out of the ordinary” – Paul was let go.

He was diagnosed with early-onset frontotemporal dementia two years ago, which forced him to retire from working altogether.

The father-of-three is trying to make the most out of life, despite the looming fog guaranteed by dementia.

His wife Melissa says the diagnosis has been tough on their children Samantha, 19, Christopher, 17 and Brianna, 15.

“It’s an isolating and lonely journey for a teenager,” she says. “When the kids mention that their dad’s got dementia, other teenagers don’t know what to say.”

Millions affected

There are 36 million people around the world with dementia and 7.7 million are diagnosed each year.

Dementia is diagnosed if two or more cognitive functions are impaired including memory, language skills, understanding information, spatial skills, judgment and attention.

Alzheimer’s is the most common form of dementia, affecting about two thirds of cases.

But cases of people under 65 are very rare.

A world-first drug trial is currently underway in Melbourne that has the potential to revolutionise the most common form of dementia.

Stephen Macfarlane, Director of Aged Psychiatry at Alfred Health, says if the drug was successful it could have huge implications for patients.

“The Anavex drug is a compound which aims to prevent the accumulation of abnormal proteins that cause Alzheimer’s disease,” he says. “But more than that, it has an independent memory improving function.”

Christopher Missling, a spokesman for the drug company behind the trial, says the need is huge.

“Alzheimer’s disease if the largest market,” he says. “It is estimated to be between 13 and 67 billion.”

Bucket lists

Many patients with terminal illnesses make bucket lists of the things they want to do, but Paul’s symptoms mean he has lost the ability to make lists.

“What’s hard about that is Paul’s ability to plan, Paul’s ability to make decision, Paul’s ability to organise,” Melissa says.

But Paul is determined to still live an active life.

“I can still construct things as I always have,” he says. “I can be a father.”

Now he’s retired, the handyman has taken on the job of making his children’s lunches each day.

“I’m learning to know what they like and what they don’t like,” he says.

And while bucket lists are off the table, he’s sure to write another kind of note most days.

“I’ll leave a little note with their sandwich to see that they have a laugh,” Paul says.

“[They say things like] ‘Don’t eat this bit of paper, have a good day’.”

Watch the full story on The Feed tonight at 7.30pm on SBS TWO.