By Natasha Egan
A new national online resource that will better support people living with younger onset dementia, their families, friends and carers is up and running.
The Younger Onset Dementia Forum, from Alzheimer’s Australia Vic, provides a platform for those touched by the condition to connect, share information and support each other.
Alzheimer’s Australia report nearly 24,000 Australians are living with younger onset dementia, which is when symptoms for any form of dementia occur before the age of 65.
Being under the age of 65, people living with younger onset dementia face a completely different set of challenges to older people that are diagnosed with dementia, said Jenny Philipp, Program Manager, Early Intervention Services at Alzheimer’s Australia Vic.
“They may still have children living at home. They may still be working, potentially at the height of their careers,” she said.
“Financially they may still have a mortgage to pay as well as school fees and other expenses. They are likely to have planned a future based on the fact they would be working until the age of 65.
“If their working life is cut short, this causes them to have to rethink their future plans in relation to finance, travel, retirement and more.”
Ms Philipp said there was also a lack of services available for people living with younger onset dementia because they don’t typically qualify for aged care and find it difficult to fit in to disability services.
“The forum is one way of providing access to information that is difficult to find through mainstream pathways to a specific group of people with specific needs,” she said.
Dementia in younger people is less common than dementia occurring after the age of 65, but Australians as young as 30 are living with the condition, Alzheimer’s Australia reports.
L-R Jenny Philipp and Belinda Nixon, both from Alzheimer’s Australia Vic, at yesterday’s launch of the Younger Onset Dementia Forum
The online resource was launched nationally on Wednesday following an 18-month Victoria-based pilot program, which involved 50 participants.
The pilot was met with overwhelming enthusiasm from those consumers using it and confirmed the need for a national outlet that allows for peer-to-peer information sharing and support twenty-four hours a day, seven days a week, Ms Philipp said.
The most important aspect is the peer-to-peer support element which is about ensuring people feel connected, she said.
“We hope the forum helps people feel less isolated and reassures them that they are not alone,” Ms Philipp said.
Conjoint Professor Brian Draper from UNSW’s School of Psychiatry, who is an active researcher in the area of younger onset dementia, said the forum was a great idea.
“It allows for people affected by younger onset dementia to have a place to share experiences and ideas, provide each other support and basically network from their own home,” Prof Draper said.
“[This is] extremely important as many younger people with dementia and their families can easily become socially isolated.”
See the Younger Onset Dementia Forum (www.talkdementia.org.au) for more information and to join the forum.
A much needed step!
My daughter is 34 years old and has a Mitochondrial Disorder which has resulted in dementia for the past seven years. She is living at home with herus but we are finding it more and more difficult to manage as she continues in her cognitive decline. We would value speaking to professionals and families that can advise us re accommodation for when we can no longer care for or girl and ways to help her to make the most of her terrible situation.
Thanks
Tony and Dawn Richards