More needs to be done to help the forgotten people living with younger-onset dementia, according to occupational therapist Naomi Moylan.
When most people think of dementia, they imagine elderly individuals in their seventies or eighties. Yet an increasing number of people in their 50s – and sometimes even younger – are living with younger-onset dementia (YOD).
While this may reflect a rise in cases, it’s also likely due to greater awareness and improved diagnostic tools. Estimates suggest that over 28,650 Australians currently live with younger onset dementia, a number projected to grow to more than 42,400 by 2058.
Dementia in younger adults often goes unrecognised due to the broad spectrum of symptoms it presents. Unlike traditional forms of dementia, which typically exhibit as memory loss, younger-onset dementia can manifest in a range of ways: changes in personality, difficulties with problem-solving or struggles in performing familiar tasks.
For individuals in their 50s, these symptoms are sometimes mistaken for stress, depression, or even midlife crisis. Such misattributions often delay diagnosis until the disease has progressed significantly, leaving the person living with younger-onset dementia and their family with fewer options for effective intervention.
This is why routine cognitive assessments should be a priority whenever behavioural changes arise in patients over 50, allowing for earlier support and a better quality of life.
Occupational Therapy (OT) can have a transformative impact on the lives of people living with dementia. However, as OTs working with younger-onset dementia clients, we often see patients only after significant deterioration.
By the time they receive a diagnosis and seek OT support, many have had to leave their jobs, their personal relationships are strained, and their daily lives are markedly disrupted.
Despite these challenges, OT interventions can bring meaningful improvements to quality of life, helping people adapt to their environment and routines that support independence and safety.
Recognition of younger-onset dementia as a distinct medical and social issue is gaining traction. Supported independent living homes are specifically designed for people living with younger-onset dementia.
These forms of accommodation address the unique needs of younger adults with dementia, which differ significantly from those of older residents in traditional aged care facilities. Key features include a garden space to encourage engagement with the outdoors, as people living with younger-onset dementia can be more mobile and require large spaces to walk around.
Dementia enabling design features help to create a home for five people where they are enabled to engage in everyday activities such as cooking, doing laundry and engaging in meaningful activities.
At Perth’s currently only supported independent living home run by the Brightwater Care Group, the home coordinator is an OT and there is a multidisciplinary YOD allied health team so people can access therapeutic interventions designed to preserve and support functional abilities.
While these developments are a step forward, as a nation, we have a long way to go. A recent study from Dementia Australia revealed that more than half of the population believes there is inadequate support for the 421,000 people living with dementia.
The field still struggles with many unknowns surrounding the causes, progression, and treatment of this devastating condition, which complicates the development of comprehensive care plans.
While there is no cure, OT remains one of the most effective interventions for maintaining quality of life, fostering independence, and adapting to the challenges of dementia.
With no one-size-fits-all solution, OT provides individualised strategies that allow people living with YOD to continue engaging with their communities, stay connected with family and friends, and retain a sense of purpose and dignity.
Early diagnosis and support, combined with targeted interventions could provide a significant improvement in the quality of life for people with younger-onset dementia and help alleviate the toll on their families and loved ones.
By embracing cognitive screening and increased awareness, we can better serve this often overlooked cohort. Ensuring that people with younger-onset dementia receive timely support is critical to their wellbeing and underscores our commitment to compassionate, holistic care.
ED: Naomi Moylan is an OT specialised in working with people with YOD and is project coordinator with Brightwater in Perth.
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