Dementia Australia working to ensure better outcomes for people with younger onset dementia during their transition to the National Disability Insurance Scheme

Dementia Australia’s Younger Onset Dementia (YOD) Key Workers provide tailored support to their clients throughout their experience living with younger onset dementia.  

With the NDIS rolling out across the country the Younger Onset Dementia Key Worker (YODKW) Program is working hard to support people with younger onset dementia as they prepare for their NDIS planning sessions and provide services such as coordination of supports. 

YOD Key Workers, delivering Coordination of Supports in the NDIS, play a vital role in negotiating support costs with providers, making arrangements for support delivery and providing information and ongoing support to providers regarding the specific needs of people with younger onset dementia. 

Through the NDIS, many people with younger onset dementia are receiving government supports for the first time. This opens up a world of opportunity and with coordination of support through Dementia Australia in place, many have been able to set up new routines and investigate avenues of support which they had not known were possible before, such as support to go fishing, home modifications and therapy interventions.

Regardless of whether the NDIS has rolled out in their area or not, many people with younger onset dementia, their carers and families have received personally tailored support from their YOD Key Workers to assist them in meeting their own unique goals.

In the ACT, for example, people living with younger onset dementia attend weekly programs where they are involved in the crafting of various items which they then have the option to sell through various outlets across the state. “Quilts for Linda” is a project that was started by dedicated volunteer Bev Everard. 

Bev started this project out of a strong desire to help her sister, Linda who is living with Younger Onset Dementia. Linda has a lifelong love of quilting but is no longer making as many as she used to.

Bev, armed with Linda’s fabrics that have been lovingly collected over the years, has been working tirelessly both sewing and recruiting support from other volunteers and people living with dementia to make beautiful quilts and bags.  All funds raised from the sale of ‘Quilts for Linda’ directly supports the programs and services of the ACT Younger Onset Dementia Key Worker program.

The group has been so busy that the extra quilts are also now being gifted to people living in residential aged care to brighten up their rooms.

To find out more about ‘Quilts for Linda’ or to purchase one contact the Dementia Australia ACT Younger Onset Dementia Keyworker team on (02) 6255 0722 or ACT.admin@dementia.org.au

If you have a diagnosis of younger onset dementia, a younger onset dementia key worker can help you, your family or carer in a number of ways. The best way to access the Younger Onset Dementia Key Worker Program is to call the National Dementia Helpline on 1800 100 500.

For more information please visit the Dementia Australia website.