I am more than my dementia diagnosis
Receiving a dementia diagnosis may stir up a range of emotions, however it doesn’t have to define who you are.
We spoke with three people impacted by dementia who talked about the importance of remembering that we remain individuals with stories to share, love to give and relationships to cherish.
“I want people to know that dementia isn’t the end”
Dave describes his diagnosis of Frontotemporal dementia (FTD) as a ‘kick in the guts’, as he was already facing a difficult time battling prostate cancer.
“I went through some really bad times at the start where I just wasn’t good at all and I wasn’t handling it,” he said.
“But I’ve turned all of that around now and the last couple of years I’m full of life again.
“You know what changed? I realised I’m still Dave and I’m more than my diagnosis.
“I’m now driven to help others who are facing a similar reality. I’ve become a Dementia Advocate and a Prostate Cancer Advocate.”
Dave said his decision to become a Dementia Advocate was because of the lack of understanding around the condition.
“When people hear the word dementia, they just automatically think your life is over – and that’s exactly what happened to me,” he said.
“Friends would come over for lunch and they would avoid talking to me. They would chat with my wife and leave me out of conversations.
“Deep down I think it’s a misunderstanding of what dementia is and how it affects people.
“I want people to know that dementia isn’t the end and it doesn’t define a person.
“I’m still living my life to the fullest and neither diagnosis is slowing me down.”
“They didn’t know him like I knew him”
For Fiona, whose father Jock lived with Alzheimer’s disease, one of the hardest things was that people didn’t understand him beyond his diagnosis.
“I remember sitting next to Dad in his room and one of the carers walked in and said, ‘Good morning, Sunshine’,” Fiona said.
“She had the best intentions but if she really knew Dad, she wouldn’t call him ‘Sunshine’.
“That’s when I realised I needed a way to give the carers some insight into Dad’s character, career and interests because if they knew more about him it might improve his care and go some of the way to explaining his behaviors.”
Fiona decided to make a short video capturing her father’s life and who he was, beyond his dementia diagnosis.
“I would bring in my iPad and say to the carers ‘Have you got a couple of minutes just to have a look at this little video about Dad?’
“I had great material because there were so many amazing photos from his life and I was able to animate his personality through photographs and a narrative about what he was like.
“I wanted to endear the carers to Dad and show them that he had a terrific sense of humour, a great sense of fun and had lived a very interesting life.
“I think being able to tell stories in a succinct, visually engaging format can go a really long way to restoring a person’s identity, if and when they go into full time residential care”.
“It’s important we treat them as we’ve always treated them”
Dementia Advocate Susan (pictured above with her husband John who lives with dementia) said that although the diagnosis came as a shock, it wasn’t going to stop them living their lives to the fullest.
“I think as soon as the word dementia is mentioned everyone thinks that’s the end and that’s probably what John thought,” Susan said.
“But early on I remember saying to John: ‘You have a diagnosis of dementia, but you’re still John and I’m still Susan, and we still do the same things’, and that’s exactly what we did.
“After John’s diagnosis, we went on two hikes in Spain. It was hard but we managed.
“It’s important we treat them as we’ve always treated them.”
Looking for support?
Dementia Australia provides a range of services, support and programs to help people living with dementia, their families and carers to navigate the various stages of dementia including what to do when you receive a dementia diagnosis.
You can also talk to one of our friendly Helpline advisers to find out what support is available to you.
Contact the National Dementia Helpline on 1800 100 500, email helpline@dementia.org.au or chat with us online using our webchat.