“Getting a dementia diagnosis was an enormous relief”

Getting a diagnosis of younger onset dementia at the age of 55 was ‘an enormous relief’ for Dementia Advocate Jonathan.

“I was living a nightmare as I knew something wasn’t quite right,” he said. “I was difficult to live with and I felt I wasn’t doing my job as well as I used to.”

One of the benefits was that it helped him, his wife Sophie and their three daughters, who were aged 17 to 20, to understand some of the challenges he’d been facing in the years leading up to his diagnosis.  

“Life is so much better now that I’ve been diagnosed as I now understand what was happening with me,” Jonathan said. “I decided early on that I was going to be absolutely open about my diagnosis.”

Being upfront about his condition helped those around him to understand the reason he was sometimes forgetful or why he would get frustrated when trying to keep up with multiple conversations.

“People really do care and have been very supportive.” he said.

Jonathan decided to stop work as a Business Development Manager and concentrate on his wellbeing.

“All the things that I didn’t have time for; I started doing those things straight away,” he said.

“I go to the gym every day, have been on camping trips with friends, I’m in a mixed netball team with my daughters and have travelled interstate to spend time with my sisters and mother.”

Following Jonathan’s diagnosis, he and Sophie accessed a number of Dementia Australia services including workshops and counselling and the National Dementia Helpline.

Jonathan is now a Dementia Advocate for Dementia Australia and shares his experience to support others impacted by dementia.

Simplifying and enjoying life

Like Jonathan, Janice and her husband Richard decided to simplify their lives and do the things they loved when Richard was diagnosed with frontotemporal dementia.

They retired from their busy, professional working lives and travelled, spent time with family and friends, and remained active.

Even when Richard’s condition progressed and he became largely non-verbal the couple still found ways to connect and communicate.  

Richard’s last word was ‘beautiful’, a word he tried to say at least once a day and a wonderful memory that Janice holds dear.

“We had enjoyment and fun until the last week of his life,” Janice said.  

Her advice to others going through a similar situation is to simplify their lives.

“We made our lives as simple as possible and by doing that we learnt so much about what’s important in life.”

A less than ideal diagnosis process

For Tamara, whose mother Margaret lived with frontotemporal dementia, the diagnosis process was a long journey involving numerous specialists.

“Even when we got the diagnosis we weren’t really told what was ahead,” Tamara said. “It was only really upon reading things on the Dementia Australia website that I found out information that the doctors hadn’t told us.

“I think it’s starting to change now where I think they are trying to tell people when they get dementia that it is a terminal illness.

“I think if we knew that, I would have made an effort to spend a lot more time with her.”  

What to do following a diagnosis

If you or someone you know has been diagnosed with dementia there are many things that you can do.

Visit the What Next? After your diagnosis page to find out more.

You can also view our library guide https://dementia-org.libguides.com/Living-with-a-recent-diagnosis-of-dementia for a range of helpful resources.

Contact the National Dementia Helpline on 1800 100 500, email helpline@dementia.org.au or chat with us online using our webchat.