Yes, younger people can get dementia. But it’s often missed

Dementia doesn’t only affect the elderly – it can also strike when you’re young. Here’s what a younger onset dementia diagnosis can mean and how to cut your risk.

When she was in her 30s and 40s, Donna Lee noticed she seemed to be a little more forgetful than the average person.

But it wasn’t until more than a decade later that she realised something was definitely wrong.

Fights with her partner at the time over her behaviour had increased, and occasionally he had accused her of lying, which left her genuinely dumbfounded.

“It sounds stupid, but he was trying to borrow money from me and I couldn’t remember I had these bank accounts,” Donna says.

“He thought I was lying, but I just couldn’t remember.”

Around the same time, at the age of 52, Donna suddenly lost her job as a cleaner, for forgetting to return a vacuum to the office when she went on holiday.

Now, looking back, she admits she had been struggling with confusion over everyday tasks in the lead-up to being sacked.

She went to the doctor, hoping for answers, but was referred to a psychiatrist and then a neurologist before receiving a younger-onset dementia diagnosis.

“It was such a shock,” Donna says.

How common is younger onset dementia?

About 28,000 Australians are living with younger onset dementia (also called early onset dementia).

In extremely rare cases, that includes young children and teens.

Dementia Australia chief executive Maree McCabe says younger onset dementia is when someone has dementia in their 30s, 40s and 50s.

More than 400,000 people are living with dementia nationwide but, Maree says, the vast majority are more than 65 years of age.

She says dementia can go undiagnosed in younger people.

“A reason it can go undiagnosed is because practitioners just don’t look for it in younger people.

“For many people under the age of 65, it can take up to seven years to uncover a diagnosis,” she says.

She notes that a general lack of understanding of dementia adds to the problem.

“People often think it’s about just being forgetful,” she says.

“But there are 100 different types of dementia, and it’s known as the invisible disability because what we don’t often see we don’t understand.”

What a younger onset dementia diagnosis meant for Donna

Because Donna wasn’t elderly, many family members didn’t believe her diagnosis, while her children struggled to grapple with what the diagnosis would mean moving forward.

“I didn’t understand what it meant and a lot of people in my life didn’t know either,” Donna says.

It wasn’t until she started attending support groups that Donna began to understand dementia and its impacts.

She also started to realise her experience was similar to that of her mother, who had been diagnosed with dementia in older age.

“She used to write everything down on the calendar — like what she did, what she ate and even if it was a good day,” Donna says.

“I thought it was quite odd but now I understand what she was going through.”

How Donna is coping with younger onset dementia

Writing things down is a strategy Donna also uses to cope.

To keep her mind active, she has also become an ambassador for Dementia Australia — attending events and handing out fact sheets to the public in western Sydney to help raise awareness.

“I felt really alone when it happened to me, and I don’t want other people to feel that,” she says.

“People feel really confronted by dementia because they don’t know what it is or understand how to deal with it, which is why I am doing this.”

The signs you may have younger onset dementia

Memory loss, disinhibited behaviour and language problems are all possible indicators of dementia.

One of the most important things for people dealing with the condition is to pick up the diagnosis early, Flinders University senior research fellow Dr Monica Cations says.

“People might be experiencing memory loss but often this is associated with depression or nutritional deficiencies or a stroke — so it’s really important to get those ruled out,” Dr Cations explains.

Disinhibited behaviour means normally conservative people start acting out in ways that may include gambling, drinking or having extramarital sex, despite no previous interest in these activities.

Problems with language and words are also often a sign, along with becoming disorganised and losing emotional control.

Another common indicator can be whether dementia runs in the family, Dr Cations adds.

“For a very small group of people there is a direct inheritance of dementia.

“If you are young (and have dementia), chances are higher that you do have directly inherited dementia — but that’s a minority of cases.”

How you can reduce the chances of getting dementia

While a younger onset dementia diagnosis is distressing, Professor Julie Stout from Monash University says it is a myth you can’t prevent dementia or do anything about it once you have it.

“Dementias have a very gradual onset, so there are things you can do to reduce the likelihood of getting dementia or how fast it happens,” Prof Stout says.

“One way is to keep the cardiovascular system healthy and keeping your brain healthy — by keeping your blood sugar under control and not having diabetes, and keeping your brain active by engaging in mentally challenging activities.”

In Australia, there are approved drugs to help manage dementia, but no approved drugs to specifically treat younger onset dementia (overseas trials are underway).

Some common dementia drugs can help relieve symptoms, but Prof Stout says the most effective approach for younger patients is about healthy life habits.

How to reduce your risk of getting dementia

Here are some ways that may reduce your risk of getting dementia, according to the Victorian government:

  • Exercise your brain with mentally stimulating activities.
  • Stay socially engaged.
  • Stay physically active.
  • Avoid excess alcohol consumption.
  • Enjoy a brain-healthy diet.
  • Look after your heart.
  • Protect your head against injury.

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