REAL LIFE

My sister got dementia at 35

'Usually, it affects people over 55'

Dementia is robbing Sarah’s young sister of the life she knew.

Here, Sarah Wainwright, 40, tells the story in her own words.

‘High five!’ my little sister Meagan said to a shopper, holding up her palm. ‘Er, okay,’ he replied, raising his hand so she could slap it.

‘Meagan!’ my mum, Rhondda whispered, embarrassed.

It would have been cute had the man not been a complete stranger – and Meagan hadn’t been 37.

I’d started noticing changes in her four years earlier, when she’d come round to do my books. I have a travel company, and she had a business degree and worked in finance. ‘What’s your password?’ she said, sitting at the computer. ‘It’s not changed,’ I replied, surprised.

She’d been using it for years. Now, she started asking me every week what it was. Sometimes she’d pay a bill twice too. Meagan also became obsessed with food. I’d order pizza on bookkeeping days and she’d pace up and down, looking out of the window for the delivery boy. ‘He’s a minute late. Ring him Sarah,’ she’d demand.

happier times
Me and Meagan in happier times

Once, her husband Liam rang to say their toddler Luke had hit his head and was bleeding badly and needed stitches. ‘Go home!’ I cried to her. ‘Nah, he’s fine, Liam will take him to hospital,’ Meagan replied, unfazed. I was shocked.

Until recently, Meagan had been a devoted mum to Charlotte, then five, and Luke, two. But something had changed. She’d stopped taking them out. She’d make two-minute noodles for herself, leaving Liam to make dinner for the kids.

She no longer hung out with her best friend Kate either. ‘Meags, if you don’t sort yourself out, you’re going to lose everything,’ I told her. ‘Nah, I’m fine,’ she said. ‘She’s become reclusive,’ Kate, 35, said to me, concerned. ‘Maybe it’s late onset post-natal depression.’

Meagan and Charlotte
Meagan and Charlotte
And with little Luke
And with little Luke.

In 2016, we took her for tests but doctors couldn’t find anything wrong.

Finally a psychiatrist noticed something ominous on her CT scan. ‘She has behavioural variant frontotemporal dementia, or bvFTD,’ he said. ‘Dementia?’ I cried. ‘But she’s only 35!’ ‘It’s very rare at her age,’ he agreed. ‘Usually, it affects people over 55.’

This type of dementia affects the right and left frontal lobes, which are involved in mood, social behaviour, attention, judgment, planning and self-control. It explained the changes to her personality.

Meagan stayed in hospital for two weeks but never once asked, ‘Why am I here?’

They wanted to try a new drug to slow the progress of the disease but during the MRI she kept hitting the emergency button, so she was rejected from the trial. So Liam took care of the kids and she went to live with Mum, 71, and our dad, John, 72. Mum had to lay out her clothes in the morning and cook her meals.

Meagan spent most of the time in her room, watching videos of Leonardo DiCaprio, her teenage idol. She became obsessed with showering too. ‘She’s had 19 showers today,’ Mum cried one day.

As bvFTD changes eating patterns and causes cravings, Meagan also wanted to eat cheese and chocolate constantly.

Mum put locks on the fridge and pantry, but Meagan gained 30 kilos, going from a size 10 to a size 20.

When I noticed she was spending all her time tapping on her phone, I was worried she was corresponding with someone who might be taking advantage of her. Taking a look, I saw she’d been searching ‘ugly sea creatures’, ‘shark attack victims’ and ‘puppies and rainbows.’ I had to laugh. Otherwise I’d cry.

family
Mum and Dad care for Meagan now

I feel terrible that Mum is doing most of the caring for Meagan, but there’s nowhere for her to go. Homes are full of elderly folk and Meagan would insist on high-fiving them.

She likes me driving her to the local lake and back, reading out the names of the roads we pass. And she enjoys listening to music from the ’90s and watching Police Academy 2, which we liked as kids.

Liam takes Charlotte and Luke to visit on weekends. Aged eight and five they’re too young to understand. Sometimes she says, ‘I miss being with the kids,’ which hurts. 

Kate visits her often. Meagan will chat for a while, then say, ‘I’m going to my room now,’ and disappear.

Her condition gives her a life expectancy of five to 12 years, although I feel I lost her a long time ago.

I want to raise awareness of younger onset dementia. To look at Meags, you can’t see anything wrong and there aren’t really facilities catering for young people. I’m working on getting community-built housing for young people like Meagan, so she can be with others her age and Mum and Dad can have some respite.

In the meantime, I’ll keep returning her high-fives – she insists on 30 each time we meet now – and quietly mourn the vibrant, loving, sassy sister I once knew.

WHAT ARE THE EARLY SIGNS OF DEMENTIA?

Although symptoms can vary from person to person and are often very subtle, some of the early signs of dementia include:

● Memory problems, particularly remembering recent events
● Increasing confusion
● Reduced concentration
● Personality or behaviour changes
● Apathy and withdrawal or depression
● Loss of ability to do everyday tasks.

For help or advice go to helpwithdementia.org.au

Read more in this week’s issue of that’s life, on sale now.

Related stories