They say with dementia, you lose your loved one twice – once with dementia and again when they actually die. Dementia is the second leading cause of death in Australia.
Ernie Steven is just one of half a million Australians battling dementia every day.
Since being diagnosed with dementia in mid-2020, the now 83-year-old Canberran has moved into a permanent place in a respite care facility.
Mr Steven’s daughter, Mandi, has a strong bond with her father. She said supporting somebody living with dementia can take a toll on the whole family.
“It’s like my dad’s gone. He doesn’t know who I am anymore,” Ms Steven said.
The last big Steven family gathering was on Christmas Day 2021. A few days later, there was a COVID-19 outbreak in the aged care facility meaning no one could visit their loved ones for five weeks.
“When I went to see him as soon as I could, about two weeks ago, he didn’t know who I was, so the five weeks of no family contact had a really big impact on him and his memory,” Ms Steven said.
“The man who he once was is now gone.”
Ms Steven said her father should have gone into the facility a lot sooner, but his wife wanted to keep him at home and care for him for as long as she could.
“It’s really hard, and it affects us all differently, but we all want what’s best for him,” Ms Steven said.
In honour of Ernie, his family has registered for the annual Memory Walk and Jog. It’s held to provide support, funding and research for people living with dementia in Australia.
“I wanted to feel like I can do something to help make a difference,” Ms Steven said.
“It’s a lot to go through, so if there’s anything I can do to help provide resources or support for families also struggling, then that’s something I’d like to do to help people.”
The annual Memory Walk and Jog will be held this weekend, on Sunday, 27 February.
Ms Steven created a team for her family to participate in the fundraiser together called The Good, The Bad, The Ugly, which comprises eight people, including Ms Steven’s partner, daughter and niece.
They have already raised almost $3000.
“I am really grateful to have received so much support and I look forward to the atmosphere of the event and becoming a part of something bigger to help people and make a difference,” Ms Steven said.
The Memory Walk and Jog has already raised $75,000 of its $125,000 goal for Canberra so far this year.
National Campaigns and Community Fundraising Manager of the Memory Walk and Jog Jason Turik said the inclusive event is about bringing a community together.
“It’s a really great day to show everybody that we’re in this together and that you’re not alone in this journey,” he said.
“Everybody that attends has a connection to dementia, so we want to raise funds so we can support Dementia Australia’s services and research.”
This fun day out welcomes people of all ages to come along and walk, jog or run and beat dementia together.
Mr Turik said over 1000 people are estimated to participate in the fundraiser this year, with over 750 registered already.
“This fundraiser is about raising much-needed funds to support the work of Dementia Australia, which provides the invaluable support, education and resources for people living with dementia in Australia,” Mr Turik said.
The event commences from Barrine Drive and continues all around Lake Burley Griffin, offering three different courses with a two, a five and a 10 km distance to cater for everyone’s athletic abilities.
Registrations are still open and start from $41 per person, with options to register individually or as a team.