People think my husband is too young for dementia

When Chris’s husband Craig started experiencing changes in behaviour in his early 50s it was initially considered male menopause or even a midlife crisis, before he was diagnosed with bipolar.

However Chris, an experienced nurse, knew that bipolar was unlikely and continued to push for further testing.

“I was trying to get the right diagnosis because I knew what we were doing wasn’t working,” she said.

Living in a regional area with fewer services, coupled with the added complications of COVID lockdowns, meant it took years before Craig was finally diagnosed with frontotemporal dementia in his late 50s.

Another couple who understand the challenges of getting a young onset dementia diagnosis are Kristin and Grant (pictured above).

Kristin, who is also a nurse, advocated for Grant throughout the diagnosis process which was lengthy and difficult, even with her knowledge of the healthcare system.

“We were told the first appointment for a neurologist would be in a year’s time,” Kristin said.

“I ended up ringing an emergency clinic for a cancellation, which was when we got the diagnosis.”

Following Grant’s diagnosis with young onset Alzheimer’s disease at age 52, the family decided to relocate from the Sunshine Coast to Brisbane so they could access better support.

Navigating life beyond a diagnosis

Both Kristin and Chris have retired early to care for their husbands.

Chris, who previously worked night shifts, said Craig is happier now that she’s at home.

On the days he is with his support worker, she catches up with her girlfriends and works on her patchworking skills.

For Kristin, the decision to stop working at the height of her career was difficult.

She and Grant reevaluated their life plans, working out what they could and couldn’t do, and took time to grieve the life they thought they were going to have.  

“I had just been appointed to the National Neonatal Nurses Association committee and I was in a managerial role, trying to take opportunities where I could get them,” Kristin said “And just like that, it’s all gone.

“Work was a big part of my identity, so I’m still grieving that. That’s why I’ve thrown myself into advocacy, to give me more purpose.”

Raising the profile of young onset dementia

Kristin decided to become a Dementia Advocate to highlight the challenges associated with a young onset dementia diagnosis.

“The signs and symptoms are very different and challenging and come at a time of your life when you didn’t think you’d be dealing with it,” she said.

“We need to improve the profile of young onset dementia in the community because people just don’t realise how common it is.”

Meanwhile, Chris is particularly passionate about advocating for people living in rural and regional areas where getting a doctor’s appointment can take up to eight or nine weeks.

She also runs a Young Onset Dementia Group as part of Dementia Inclusive Ballina.

Looking for support or information?

Dementia Australia is here for people of all ages affected by dementia.

Kristin had monthly counselling sessions with Dementia Australia and took part in our Young Onset Dementia Day Course at Milton, which she said helped her and her family understand what Grant was going through.

The National Dementia Helpline is available 24 hours a day, seven days a week, on 1800 100 500.

For more information about young onset dementia, read our Young Onset Dementia Guide.

Chris and Kristin are both Dementia Advocates for Dementia Australia. 

You can find out more about the Dementia Advocates program on our website.