Young Onset Dementia Supported Independent Living

Experiences of residents, families and staff

What is Young Onset Dementia? 

Young Onset Dementia (YOD) refers to dementia that begins before the age of 65. It not only affects the person living with the condition but also has a profound impact on their immediate family. Family members often become carers and advocates, navigating complex health, disability, and aged care systems to secure appropriate treatment and support. People living with YOD typically live around 10 years from diagnosis and may require intensive care during this time. 

What residential care options are available? 

Almost 30,000 people are living with YOD in Australia. Despite this, there are currently few specialised supported housing options available. According to the Australian Government people under 65 should not be placed in residential aged care facilities as their care needs differ significantly from older residents. Meanwhile, the National Disability Insurance Scheme, systems and services often lack adequate understanding of YOD, leaving many individuals without appropriate support. 

To address this gap, Brightwater has opened two Supported Independent Living (SIL) homes specifically designed for people living with YOD. Each home accommodates up to five residents.  

What is the research project? 

This research project will explore the experiences of people living in a Brightwater YOD SIL home, their families/carers, and the staff supporting them. It aims to evaluate how well these homes support people living with YOD and identify opportunities to improve care and services.