Sarah Wainwright misses and mourns her sister Meagan, even as she stands beside her on the verandah of the family’s Eaglehawk home. “She’s as happy as, but she’s not the same Meagan any more,” the well-known local business owner reflects sadly.

Behavioural Variant Frontotemporal Dementia (BVFTD) is the name of the terrible advancing adversary occupying the territory between old Meagan and new Meagan, about which her family is keen to raise awareness. The former Bendigo Business Awards Employee-of-the-Year was finally diagnosed with the condition in late 2016 thanks to the persistent efforts of her mother Rhondda and life-long friend Kate Jongebloed. In some ways it was a relief to pin a name to the increasingly aberrant behaviour which cost bubbly, beautiful, community-minded Meagan her marriage, two children and her independence.

“In hindsight, we think it may have been there for three or four years before diagnosis,” Sarah reflects. “It all makes sense now, but when someone who is 35 is behaving out of character, you don’t think it’s going to be dementia. Honestly, our best guess was late onset post-natal depression.”

Initially, like many insidious conditions of the brain, the changes were subtle. “Though we are very close in age, Meagan was always the really social one, whether it was with her husband’s business, their two kids, or her friends, she was always out doing things. She started not doing some of those things, just on and off. She’d be like, ‘Nah, I’m not coming in for that’, or ‘Nah, I’m not doing that’, and with such a busy life, it seemed sensible.”

Meagan, who had a flair for figures and a business degree, kept working after the birth of two much-loved children Charlotte and Luke, doing books for various businesses including Sarah’s eCruise & Travel company. But oddly Meagan started to forget passwords although they hadn’t changed in years. Her emotional responses also seemed increasingly blunted while her interest in food had heightened.

“There was one night when Luke was about two and a half and he hit his head on the coffee table and ended up having to have stitches, which his father had to take him to get, because Meagan was determined she was still coming in here to do my books,” Sarah recalls. “As if it was something really routine for Luke to need stitches.

“We would always have pizza on bookkeeping nights and we worked out eventually that that was actually what she was coming in for, because part of this disease is that sufferers become really obsessed about food. Every Monday she would be in and she would stand in the front window and just pace, waiting for the pizza delivery, which makes sense now, but then it was just weird.”

At home Meagan’s husband had become increasingly frustrated. “He called me from one family holiday and said, ‘I just can’t do this any more’. It turns out she was doing crazy things, like they might come home as a family and Meagan would walk in the door, go to the pantry and cook herself two-minute noodles, leaving her husband to get their two little kids tea. We had a couple of what we called interventions with her before we knew what was actually wrong. We said, ‘Meags, you are going to lose everything’ and nothing penetrated. She was like, ‘Nah, it will all be fine’.”

The medical profession also seemed deaf to the problem. Rhondda took Meagan to multiple mental health practitioners who concluded nothing was amiss. It wasn’t until Rhondda overcame waiting lists to get Meagan into a psychiatrist in Ballarat that he spotted an abnormality on one of her earlier CT scans.

A two-week stay at Royal Melbourne Hospital followed before BVFTD was confirmed. “That was the perfect example of the condition in some ways because in those two weeks Meags didn’t once ask why she was there,” Sarah recalls. “She just stayed on her phone because that is another one of her obsessions, watching YouTube on her phone, particularly Leonardo di Caprio, who she loved as a teenager.”

Meagan’s parents have now become her carers and it will become harder for them as the disease progresses. The family’s hopes that she might be part of a trial to test a new drug aimed at slowing the progress of the disease were dashed when she refused to lie still for an MRI.

“The reason she didn’t get accepted into the clinical trial is that she wouldn’t behave. She kept hitting the emergency button and the radiographers were getting shirty. They were just there to do the MRI and didn’t understand why this grown woman kept smacking the emergency button, because when you look at her, you can’t see anything wrong.”

It’s the prejudice and lack of awareness about younger onset dementia, which afflicts more than 26,000 Australians under the age of 65, that the Wainwrights hope to address.

“There is a real stigma that goes along with it and there are no facilities catering for young people,” Sarah says. “They get put in with old people, and I don’t mean that disrespectfully, but there are different needs. And frankly, you wouldn’t want Meagan in those environments high-fiving frail elderly people, because one of the ways she interacts with people is high-fiving them over and over. She doesn’t mean it aggressively, but she is very heavy-handed. It is also her distraction method when she is not getting what she wants which is usually chocolate, cheese or pizza.

“It is very wearing, but I get to leave at the end of the day. Mum and Dad don’t. I intentionally remain a bit ignorant of what lies ahead because it frightens me so much.”

For information see www.dementia.org.au  

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