Picture this: you’re approaching retirement, and those things you’ve worked hard your entire life to achieve – more travelling, spending time with your grandkids, perhaps making a sea change – are almost within your grasp.
Then you get the news: your husband has younger onset dementia (YOD) – a disease you thought only applied to ‘old people’. You’re blindsided. Worse still, it feels like nobody understands and you have nowhere to turn.
This is the situation Julie De Napoli found herself in eight years ago when her husband Frank, then aged 58, was diagnosed with YOD. The former GM, responsible for hundreds of people in his working life, could barely arrange the hands on a clock face in a cognitive test.
“It was a shock, I can’t tell you how I felt. It was heartbreaking. Walking out of there, I was devastated,” Julie recalls.
And so began the couples’ YOD journey; one that, according to Dementia Australia, is experienced by around 28,000 Australians.
YOD is used to describe any form of dementia diagnosed in people under the age of 65. It can be diagnosed in people in their 50s, 40s and even 30s. Without a major medical breakthrough, Dementia Australia reports this figure is projected to increase to 41,250 people by 2058.
Despite this, Julie couldn’t find any local support that was suitable, with services geared towards older people or those with more advanced dementia. Frank’s dementia is thankfully slow-progressing, and while he still relies on Julie as his full-time carer, the couple remains active and social. “The traditional places would have been detrimental to him,” Julie explains.
Elizabeth Baxter (pictured below) is a Dementia Services Specialist with VMCH. She’s passionate about creating positive change for people living with dementia and their families, with 16 years in the sector.
Sadly, she says the De Napoli’s story is not uncommon.
“Funding for YOD support now falls under the NDIS, which means there’s more red tape involved and as a result, many organisations have dropped their programs for YOD. There are very slim pickings for support in Melbourne’s east – it’s a huge service gap.”
With this in mind, VMCH has joined Caladenia Dementia Care to form the Dementia Knowledge Network. Its aim? To collaborate with others in the sector, learn about new research, and find out what support people with dementia and their carers actually want and need to improve their quality of life.
Julie and Frank recently participated in some network focus groups dedicated to YOD, where Julie suggested a trip to Bendigo to visit the Elvis exhibition (Frank’s a huge fan). Much to her delight, VMCH agreed and this month, five people with YOD and their carers enjoyed a weekend away (below).
“We’ve always done everything together, so this was a lovely piece of normal,” Julie says. Frank also attends a twice-weekly social group at Caladenia, which is an hour round-trip away from their home. “He absolutely loves it there, but it would be great to find something in addition to this that was more local,” Julie says. She’s also signed up to VMCH’s Carer Support Program, and looks forward to connecting with other carers and taking time out.
Elizabeth says VMCH’s ultimate aim is to promote connection, social opportunities and independence for people living with a YOD diagnosis.
“We acknowledge the overwhelming and emotional challenge in receiving a diagnosis, however we encourage people to speak up for what they need.”
Much like Elizabeth, Julie is determined to see more positive outcomes for people in her family’s situation. She hopes sharing their story, and some advice, will help.
“I’d like people to know it’s ok to talk about it (dementia diagnosis). That’s what I struggled with in the beginning. I didn’t tell anyone other than our immediate family what was happening. I thought I was protecting him, that others may judge us. Now Frank tells people he has dementia – and it’s really made life easier,” Julie says.
“Also, consider yourself. This was the hardest thing for me, to be kind to myself and to take time out. I didn’t do that for a very long time and it wore me down. But then I saw that Frank was happy, and I thought, I’ve got to try to be happy too.”
Elizabeth would like to hear from anyone living with YOD or their carer, or any organisations interested in offering YOD support. Call 0409 413 709.